life Sandrino

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Alessandro

                  

  

 

For you Alessandro and because all who read his story  and look at his photo may understand how happy he was, because love 

                                    mamma and papa

 

The birth

Alessandro arrived after two years of our marriage to the immense joy of everyone  He was the first son for both my family and my husband’s.

The pregnancy was very difficult and forced me to stay almost always in bed because from the third month I began to risk having a miscarriage but despite the difficulty , I accepted this almost  with joy.

 During these long days that never seemed to have an end, two childhood friends came frequently to keep me company and encourage me ,saying “Don’t worry, all this will be over in just a few months.” But now, I know on the other hand, that the birth of my son would be just the beginning of an intense life.

My tummy continued to get bigger and the gynaecologist announced that I had a ‘polidramnios’ (which is to say I had too much amniotic fluid.)At that time (1967-68) the possibility of having an ecogram did not yet exist so my only point of reference remained the gynaecologist who reassured me ,continuing to affirm that everything was going fine and that the foetus was growing normally. At the end of the eighth month I got out of bed and after only three days Alessandro was born. He weighed 3,400kg. And was only 44cm.

As soon as he was born Alessandro began to cry and that was logical that he should do so but he cried copiously and as if suffocating. I heard the doctors talking among themselves and heard them say that the baby was a bit cyanotic (what a strange word that was for me at that time; who could know what that might signify!) They also said that the umbilical cord  was not twisted round the neck, although it was very short  then, finally they let me see my son, saying to me “ look what a fine baby, and how fat he is despite being premature”. Believe me, even though I said nothing to anyone I remained disconcerted because the baby was ugly and I had the sad feeling that Alessandro was not made a normal baby  and within myself I was scared to think  “But  he’s a dwarf.”

Now one could say “If only that had been the case.” I kept this thought to myself alone for years

Both  our families were happy. My Mother in law immediately took the baby in her arms and looking at him with great admiration exclaimed “But this one is exactly Ubaldo (my husband) He resembles him exactly!” After only a month from his birth when she came to know that Alessandro had serious health problems she admitted that to be quite truthful the baby did not take after them, but in fact looked just like my Mother.

I have always thought of the moment my son was born as the most beautiful thing that could ever happen to me, a feeling of complete happiness.

Alessandro did not feed himself enough he sucked well but it was as if he couldn’t manage to swallow, and so the first visits to the specialist began, his first stay in hospital and a first diagnosis; suspected hyperthyroidism.

Certainly both for me and my husband this was a terrible blow. We thought then of consulting a medical dictionary where surely we would have found an answer and an immediate solution to the problem but among these pages one got lost among words that then seemed incomprehensible  and at the same time monstrous. We read of a medicine that our baby would have to take for all his life. How absurd it seemed to accept such a huge responsibility towards a baby that was still so small, but now we think “How beautiful if it could have been so.”   Paradoxically  we came to think if our baby would have to live an abnormal life ,well, it would have been better if he had died at once.

I was a mother who breast fed  so I was allowed to stay in the hospital beside the baby. From that moment both I and my husband began to become adult.

 

The first hospital

After the baby had been visited a nurse accompanied me to the pediatric department throughthe underground passages of the clinic. They were dark passages and on the ceiling I could patients or a corpse wrapped in a sheet. At that time I was only 25 and such things I had never seen apart from in films. The fear and alarm took hold of me more and more.

I remember that my mother in law was with me and continued to repeat ”Look ahead of you and ignore the rest” but I was too taken aback by all this happening around me that my mind was a blank but….perhaps ….it wasn’t happening to me.

 They gave me a cot with bars for Alessandro a stool and a small bedside table. In this small  room there was space for only four cots so if you needed to rest a little you had to climb two sets of stairs to reach the top of the clinic where they had fixed up a large room for the mothers .It was an enormous room with at least thirty beds, separated from each other only by green curtains It wasn’t easy to reach this room. You had t o go round a ward occupied by very ill children then climb a spiral staircase, but perhaps ,not by chance, nobody bothered about this big room It remained completely empty. When your baby of a few months is suffering in a  hospital cot, rest is not part of your life 

The days I spent occupying myself completely and alone with Alessandro .I breast fed him. I washed him .

I changed him and only at half past three at night, after several useless attempts to give him some milk,

I slept exhausted, gripping the bars of my son’s little cot.I remember that at that time that the mothers were not allowed to spend the nights beside their children even with a little folding bed Only the breast feeling mothers were allowed to stay in hospital.

Then, in the mornings when the doctors arrived for their visits I wasn’t allowed to remain close to my baby, so I never knew what they were saying about Alessandro .When finally I managed to ask them something, after a long queue of other mothers preoccupied like me, I always heard the same useless words ”Now we are looking, and trying to do something….”…

I remember that the doctors always used technical language, bringing out strange names of syndromes, illnesses and analyses that for me , so young and inexperienced were quite incomprehensible .All I knew was that Alessandro was eating too little and that made forced feeding necessary through a nasal tube which had to be inserted every time he had to be fed, which happened six hours a day. Naturally the baby cried, but the thing I remember with particular sadness is that when it was time to insert the tube, it didn’t matter if the baby was asleep (and Alessandro slept very little), they inserted the tube without even trying to wake him up, traumatizing him every time, and this happened most of all between midnight and three a.m.

When it was the time for me to breast feed him I had to express the milk myself  using the milk expresser which  was sterilized by boiling each time in a sterilizer along with a large syringe with a rubber tube.( At that time there were no ‘use and discard’ instruments or cold sterilizers. ,Thus all my time was passed like this).

If I wanted to stay beside my son I had to be able to feed him, so I had to drink a great quantity of water ,then having looked after my baby I used to join my husband, who immediately after his days’ work came to the hospital and waited hours and hours outside the ward door to hear how things were going.

Every day my mother brought me a main meal prepared at home which I pushed down only because I had to make milk for Alessandro ,because in this way I could stay beside him.

This way my days ended about half past three at night. However as the time passed and nothing happened. I decided to go home to sleep for two or three hours and to return to the hospital at six in the morning in time for his morning bath and feed

Every night I was in the company of the nurse and ,for the first night, of my mother in law, but now I was not afraid any more ,however I seemed to be a robot, And outside the gate there was always my husband waiting for me. 

I remember that one of my friends came to visit me to show me her baby. It was the day of the August festival  about mid day and she pointed out to me that over all my clothes I was wearing a big apron, long and heavy, and on my shoulders a wool jacket which I’d had on during the night, and she asked me if perhaps I felt cold, but I wasn’t conscious of this or of the heat. Because I was always on my feet I had a bad phlebitis in the legs which was very painful, but despite this the only important thing for me was that Alessandro should survive.

I tried to do things so that Alessandro  would always feel that I was calm. Instead of the usual lullaby I sang him the popular songs of that time ,trying always to smile at him even when he was suffering excruciating investigations which to me as an adult reminded me of torture.

One day Alessandro smiled at me for the first time and then came back to my mind the day of his birth when I thought that the best thing would have been his death. However now whatever could have been wrong with my son, I would have loved him just the same.

The first sounds he began to make came almost at the right age, however I noted that the movement and raising of his head were in retard compared with other children of his age .I also noted that he was very sensitive to light. He could never go near the window or even less stand sunlight. ,shutting his eyes at once and stiffening up.

 Being the full summer, the area where my son’s cot stood filled up with children suffering from typical summer illnesses like enterocolitis and also, I remember ,also typhus. .In Alessandro’s room they also put a child with meningitis. Naturally the risk of contagion between children was very high, but strangely, Alessandro resisted very well ,In fact at that time several children died.

I still have the memory of the sensation I felt when one morning at six o’clock I returned to the hospital from home and saw on a hospital bed a little body wrapped in a white sheet and completely still ( this was how they covered the dead in those days). The suspicion and the fear came to me suddenly that this little body could have been that of my child.

Alessandro’s little room was at the end of the corridor .This stretch I will remember to the end of my days. .It seemed that I’d never arrive there. I saw kilometres ahead of me while my legs trembled and my heart beat hard. Alessandro was alive and egoistically I felt happy.

The summer ended and all the routine analyses came out but, for Alessandro there was no certain diagnose. All the results were rigorously negative. ,so he stayed in hospital only to eat. I decided then that the right time had come to take him home. .During the last days he stayed in hospital I learned how to insert the tube, this way hoping to hurt him as little as possible .I became sure that Alessandro would be able to stay well at home because I had thought about him.

You won’t believe it but I was really sorry to leave the hospital .I had got attached to the surroundings, the nurses even the more bad tempered ones who shouted all the time; to the  other children there and to all the little attentions that were kept solely for them such as mending their little clothes and feeding those who didn’t have a mother nearby , pasteurized my milk because I made a lot. Think that only in the morning I was able to press out  about 700 cc. and I gave it to children who didn’t have mother’s milk.

 

first months at home

After the sixth month I started gradually to cut out the milk and try the first baby food which naturally Sandro had to take through the tube. To b able to give him meat also, my husband and I toured Rome in search of the few chemists that sold freeze dried meat .very rare at that time and was in fact meat imported from America where they said it was the food of the first astronauts  And in this way we went ahead for about a year.                                                                                             

Alessandro grew but not like other children of his age, growing very little in height, making frequent X ray photos showed that he had the first signs of hip joint dislocation. and was forced to wear Putty’s stretcher to keep his legs wide apart for about three months. This caused other problems mostly when he had to be fed, as soon as he saw the tube he twisted his eyes and tried to pin himself down without result  due to the fixing apart of his legs. It was then that we decided not to use the tube any more and tried the bottle once more to be satisfied with what he could take.

We began with the bottle full of water and sugar and then went on to the bottle of food. He ate very little and at unexpected times  but always with sugar.

 But don’t think that that was the solution; In the beginning we tried to put a whole day’s Feeding into one bottle. During the night when Alessandro wakened up in a sleepy state he managed to take 20 – 30 gr. Of puree, then became drowsy again; then after a quarter of an hour or up to half an hour he wakened up, always crying and I tried to get him to take another 20 – 30 gr. And so on for the whole night. In the beginning he took no more than half the bottle but gradually we managed to get him to take a whole bottle, but only at night.

Sometimes  it happened that waking in the morning I saw that I’d fallen asleep during the night Feeding and the bottle lay empty and all the contents had poured out on to the pillow and soaked it.. In the future, following the advice of an important psychiatrist, prof. Bollea  we tried not to force Alessandro too much to eat: he would have eaten as much and when he wanted to according to his needs  and not through our insistence.

Despite all that was happening, Alessandro was a pleasant child who amused himself by calling everything by little names invented by himself. For example his father he called papi,papa. Papetto,papuccio etc. and just hearing some music or a song that was a bit romantic ,like “You who have taken my heart”  moved him to tears.

We never managed to get him to lie on his stomach so he never crawled but moved sitting up. .I knew after reading psycho therapy books that it was important that babies should crawl on a cover and not be put in a playpen.

Once the orthopaedic frame to keep his legs separate was off  he tried to walk by himself.At age three he began to take several steps but fell, and being  very afraid did not try to walk again until he was five.

 

 

The crèche

Between two and three years old Alessandro could walk helping himself with his walking frame And it was time to put him into a crèche to socialize with his own age group.

Then we realized how difficult it would be to let him be part of the so called “normal world” ,above all because at that time there weren’t yet laws to help the disabled.. We went round about 21 crèches, beginning with the private ones which, above all, were also very expensive.

 What a delusion!  At the first crèche they told me immediately and quite openly that if they had          taken my son all the other parents would certainly have taken their children away What a point of view! But being a hard head that was enough to make me keep on trying.

So it went on. At the renowned crèche of the Montessori school, well known through its’ methods and price, obviously a possibility for me. They were pointed out as schools where even the most deficient children would become top ones, thanks to their method.  .They told me that every six months there would be a selection of the children and those who did not pass the tests would be sent away, thus to keep the standard of the school high. Needless to say, I was refused at once ,being told that I must  realize my child would never pass the selection test.

Now, one thing is clear to me ,the children who came through this school were certainly both good and very good but certainly not due to the merit of the school itself. They were already exceptionally good. .It’s easy to make clever children from clever children!

We returned, thus to the state crèches, but there also it wasn’t easy to find a solution. I remember they told me that I should have to wait for a new law to come into force (not even under discussion at that time) which would have permitted children like my Alessandro to stay in “normal” buildings and until then it was only possible to stay in buildings  “adapted”  for children regarded as “abnormal”

 We also visited a good state school which at that time seemed to have a good name but here too as soon as they heard that my son used a walking frame they said no at once, explaining that it was better to take Alessandro to  a special crèche for handicapped children, and so we went round two or three only to hear that it wasn’t suitable for Alessandro to be put along with highly mentally retarded children as he basically only had physical problems and so should be put with mentally normal children

 A the end it happened by pure chance that we heard of a young woman who was opening a crèche in the building just beside where we lived so we asked if she would take Alessandro

And when she didn’t object but instead said she’d be delighted to have him I couldn’t believe my ears.

My son suddenly became everyone’s pet because he was very friendly and chatty thus being popular with everyone. The children all stood round him. He banged with his hands and they all laughed. I think that the fact that he was the smallest of them all physically influenced them and made him more sympathetic.

And thus, as it was natural that it should be, Alessandro began again daily to drink from a bottle copying  the other little children in the crèche.

 It happened during this period that he became fastidious about confetti, sand and snow. .At carnival time the sight of confetti  gave him a sick feeling. In the summer, at the beach at the sight of sand he wanted to be picked up, the same happened in the snow. .In the summer it was a solution to take him in a push chair. For snow – we just avoided it.

 

elementary school

We took Alessandro everywhere with us. To celebrations ,on holiday with the caravan He was a child who rarely got a sore throat, sore tummy or influenza, but he did suffer from excessive nasal mucus.

He managed to get everywhere around the house with his walking frame

Also about age 3, he tried, despite some fear, to walk unaided, but after a fall he gave up walking without his frame until he was five when he tried again with success.

However he still had a great fear of sleeping. In fact if he managed to doze off at the first slight noise he wakened up with a jump, and the particular times for his waking up were at ten and three at night probably his memory of the time the force feeding tube was inserted., and he was only a few months old. Sometimes he remained without breathing for long pauses. We also tried to get him to sleep alone in his little bedroom, with all his little toys but he would have nothing of it. We also tried to take turns, my husband and I, lying on a little rubber mattress on the floor beside his bed, but for most of the night Alessandro just sat up checking if we were beside him. so we slept very little. The nights passed in waiting for the morning and if it were a Sunday or a feast day  he managed to rest more peacefully, but the other week days he was always the first to get out of bed and say ”get up!”

At five years, thanks to the method of Doman ( I believe he was a Brazilian, very advanced for his time) he managed to read whole phrases  written by me on large sheets of paper stuck on the wall. On his bedroom wall we painted together a scene of a wood in the autumn.. He painted the lower part and I did the upper part, to keep him busy and make it easier for him to go to an elementary school.

In 1976, Raffaela, his little cousin, my sister’s child, was born,. They lived on the same landing as we did. The parents worked the whole day so we looked after her as if she were our own little girl, with real joy.. Sandro was particularly happy , to the point of telling everyone that at last he had a little sister., as she was to say she had  two mothers, two fathers and a little brother.

These 8 years were for Sandro a relatively good period. For his health, but he continued to have periodic controls of his weight, height and rate of growth. I remember that his nose did not run any more. The time had come to leave the crèche  and go to the Elementary school. So we started again to find a suitable school for him.

First I looked round the schools in my area where they explained that they didn’t have the correct facilities for my son

Then I thought of looking at private schools that I knew were very well known for their excellent teachers , also because better class parents sent their children there. .There were specialized teachers, but not sufficiently specialized to be able to accept, or for the other parents to accept, a child among their ‘normal’ children who was ‘different’

There was not yet the possibility of having a ‘support teacher’. So I turned to the Inspector at the Ministry of public Instruction who phoned the Director of the Elementary school in our area, telling him to accept Alessandro in his school in so far as it was a place of compulsory education. This way he was written in.

 Naturally we had solved only the first of many problems. Alessandro in fact still fed himself from a baby bottle and had still to use nappies because he could not control his urine. For feeding and nappy changing , my husband and I were there but only about 3 p.m. after our return from work. However when he felt the need to empty his bowels he managed to tell us in time to sit him on a potty; He was always a bit constipated.

Thus we had to get the assistance of the school concierge who took on the job of warming his food bottle. The first day Alessandro wouldn’t eat anything, but we didn’t give up and decided to try again next day. But also then it didn’t work. On the other hand, Alessandro took to heart the words of the concierge (something that had never happened before) reminding him that he wasn’t little any more and should have eaten like his friends. From then on he started to eat alone, little, but something.

He quickly learned to draw strokes and dots in his book (as they did in those days) and that went well, perhaps not like the other children but he somehow filled the page in his little book.

We suffered most on finding Alessandro with his nappy soaked and dirty This happened because there was nobody who had the job to assist or accompany the handicapped and who could have thus accompanied him to the lavatory. We suffered a lot through this., so went to the call – up office of the Ministry of defence to ask for a conscientious objector to be assigned to us .For some time there had been talk about these capable young men who as an alternative to military service had chosen to be with unfortunate people in need of help .I remember we frequently saw these young men accompanying  old people usually old soldiers for a walk or  took their dogs out. Wouldn’t it be possible for us to find one for Alessandro!

They directed me to several communities who could have helped me in a simple way , in fact at my cost, to  a conscientious objector to look after Alessandro and help him as needed.

Among these communities there was one in the centre of Rome that was well known but the parish priest responsible told me he couldn’t help me because Sandro didn’t come into the category of  people who his community could help as they had to be  either orphan children, be poor or old and alone,, beggars etc.  and in a few words , he cut me out.

So I turned to another equally well known community outside Rome, but here I was also refused, this time because Alessandro was not a drug addict.. Good arguments to offer instead of charity, help or understanding! How much Christian charity, with very kind intentions, these so called ‘fathers’ who help only  the selected few.!

How much would their help cost? The objectors did not dig deeply into the purse of the local community. on the contrary, the community would be able to make use of  these young men after the time, only school hours, they dedicated to my son. Was it possible that my son would not have equal rights?

By now having lost faith  we turned to another centre this time secular, and this time run by a group of parents with handicapped children, but they told me their problems were that the state did not assign enough objectors to run things efficiently. So in the end, thinking it over I concluded that  the dogs of the colonel and general were much more fortunate. Bah! patience, in some way I would get through.

In this same period we decided to put Alessandro in for an operation to lengthen the Achilles tendons because he was walking slightly on his toes.. For this operation he had to wait in hospital for more than 20 days, due to technical problems, now they were short of plaster, now there wasn’t an orthopaedic specialist  now no anaesthetist then it was Easter. etc

. When the operation was at last over and both his legs were fixed in plaster, Alessandro caught chickenpox. Trouble, as they say, never arrives singly.

When family and friends came to visit him and asked how he was he replied “I’m fine. I’ve got nothing “ and covered his legs in plaster with the sheet so as not to show them.

Also here, in this hospital bed he wanted to be thought well of by everyone, doctors, nurses and patients who were always circling around.

So after more than thirty days he came out. He had to keep on the plaster for a month so we had to look after him and carry him once more.

I remember that during one of the check- ups at the orthopaedic clinic I had to stand waiting with the baby in my arms from 8a.m. to 12 because there were no seats. I asked one of the porters if I could  let the baby sit on a stretcher that happened to be there in the corridor. The reply was “no” because  Sandro was infectious with chickenpox. At this time 1968 the nursing assistants had a louder voice than even the doctors. Being very young and inexperienced I couldn’t think of a reply so remained standing with Alessandro in my arms. I remember how I suffered, crying inside without letting Sandro see. He must not know he had been refused  by others, nor my unhappiness. He had enough discomfort with the terrible itch on his legs under the plaster, not able to be touched nor put on mentholated talcum.

 

The little cousin is born

The chickenpox prevented Alessandro from seeing his new cousin, Raffaella, born while he was in hospital. As I have said, my sister lived on the same landing and this baby soon became like a sister for Sandro

During the summer the plaster was removed and we took Alessandro for rehabilitation exercises at the physiotherapy centre, “Anni Verdi”, specialized in physiotherapy for handicapped children.

Alessandro had not accepted this gladly ,however he clearly refused it ,trying not to look around, becoming very nervous and running a fever when we came home. The neuro-psychiatrist told me to take him to a different clinic and perhaps it would be better if I didn’t try to develop too much intelligence in my son, better perhaps if he remained slightly retarded. You can guess my reaction! The thing s I had to stand and listen to, a mother  who was making great sacrifices  to make it possible for her son to become as much as possible like normal little boys.

But at the distance of years, I must admit she was right.

Next year Alessandro went back to school and at last the law on assistance was passed. Now the difficulty was putting it into action

Support teachers were chosen from the teachers who were returning to work after having a baby.. So there was a coming and going of teachers those for one month and those for two, always some were away because they breast fed their babies.

Alessandro always had to start at the beginning. At every arrival of a support teacher he started to read the words “mamma or “papa” and to write “o” and “a” this took a whole day, This was told also to the teacher, Alessandro decided to close his book and never open it again.

He also stopped reading the things he already knew, at age seven at home I had used the method of Doman and taught him to  read entire simple phrases, now he didn’t even want to learn to write..

From a support teacher who is now a good friend of ours, he learned however to sing and to change the song’s wording for his own. It was really amusing standing and listening to him. He was very ironic and lively. I always found him in the corridors along with the porters who fussed over him so much that he was particularly happy and didn’t want to do anything else.

But it wasn’t all fun and games. One day they told me that Sandro couldn’t sit to eat at the table along with the other children because he had an enlarged tongue, ate badly and this disgusted the other children, however they found it normal that these children spat out their chewed food or even cleaned their dental plates in front of each other.

To compensate for Alessandro’s physical looks I tried to dress him very carefully, buying his clothes in the best children’s shops.

After this, always more supportive, they proposed me as class representative and for some time in the afternoons we carried ahead with many happy activities.

All the mothers always said to me “If you need it any time I’ll take care of Alessandro “ or else “I’ll take him to school.” Do you know how often I had to accept their help? Once only, memorable, but only by mistake l Each time, however rare that I really needed help I heard them say “Oh, what a pity – really tomorrow? Just tomorrow I can’t as I have an important appointment Another time!”

I realized at once that unlike the mothers with ‘normal children who helped each other ,I, with a ‘different’ child would have to rely on my own strength. Thinking to give Sandro as much interest stimulation as possible  we started to go to a choir  of polyphonic music whose members were  the most active teachers in the school.

We went all three of us together to try it out and Alessandro soon became the group mascot

 

twelve years old

This was the right age for the first church communion. Alessandro was a very religious child We sent him to the catechism for an entire year like all the other children, and to tell the truth  he learned all the prayers in the flash of an eye.

When I took him into the church for the weekly meeting I put him on a seat and shortly there was an empty space round him because all the children clustered together  in another place.  Don’t know what happened after that .I went away so as not to see him suffer.

He made a communion with love and sentiment  as I believe few children  had ever done.

 

Age 12    at Montedinove

 

Since Sandro was very attached to us parents, to me in particular, on the advice of the neurologist  we sent him to a summer camp alone to get used to being a bit distant from the family

I remember that my husband and I always stayed close to the telephone in case of a message .In the evenings we never went out. for fear they’d look for us.

Sandro ,according to the organizers, was happy and sociable with everyone, despite not sleeping at night he amused himself enough and had a lot of friends, not many among the other invalids like him but among the boy or mostly the girl assistants. Every now and again on a Sunday we went to visit him. Then and there he was content Then we could go away.

He went to the summer camps for two more years then for various reasons and for the fear of his apnea (ceasing to breathe) during the night, and sleepless nights ,we decided  it was safer to keep him home and then if one wanted to give him companions what should one do?

 

Le scuole  medie

At last the time of the elementary school was finished, with many sacrifices but also a great satisfaction  because Sandro had improved, even if slowly. He kept us company with his sympathy and jokes. We were able to go everywhere together because in one way or  another he always became the centre of attention without causing any embarrassment, and to him this was very important.

At 13 years the middle school began and Also Alessandro was popular at once, having a teacher who taught languages to assist him, he managed to speak a few words in French, but what surprised us was to see that if we spoke French, he understood and replied in Italian, not French He was not at all keen on reading or writing. We also took on two private teachers for him at home. He could only concentrate for a few minutes, then in one way or the other, with his little jokes they began to joke together and thus the lessons ended.

At school naturally most of his time was spent in the corridors, laughing and having fun. He had a special friendship with a little Sardinian boy with many family problems. This boy’s mother had come to Rome  with her four children because she was ill with leukaemia.  N. was the eldest, so in the mornings he took his smaller brothers to school .I saw him every morning when I took Sandro. When he left he gave a present to Alessandro,  a flute he’d made himself from bamboo, which I still keep.

There was also a little girl, R:  who also had (according to the teachers) a reduced ability to learn. She was part of a group of those needing help. She also spent a lot of time in the corridor in the company of the women janitors while waiting for a teacher to show up.

Now in 2001 I know that these children are making something of their lives, perhaps better than others, just with their own strength and thanks to their pride. R. is a fine  girl who works and has her own family now. And N. has returned to Sardinia and become a good baker.

One day I went to get Sandro when I came across a little girl who was in the first class in the middle school. She was rather small and thin, with black hair and eyes full of tears  To be honest she was a little ugly, like I was at her age. As soon as she saw me she came up to me looking disappointed, saying that Sandro didn’t like her any more because he liked another little girl, and this she couldn’t understand because she helped him more than this other one did.  She blew his nose, went with him to the school dining room and the bathroom and in many ways looked after him. She said to me “ Now  Sandro is going downstairs holding the hand of this other girl, go and look and tell me what has she more than I have?” 

Naturally I began to smile: I had never thought that my son could be able to make the little girls jealous. Naturally I went to look; Well, well! It really was an amusing scene, Sandro hand in hand with  a splendid little girl, tall and with long wavy blonde hair, standing tall and elegant. What a sight!.. I tried to console the little dark haired girl but naturally between us I had to agree that Sandro had excellent good taste.                       

He had true and profound friendships.

(We also treasure and have recorded the little letters written by some of his friends on leaving the first school to go to Don Gnocchi)

The janitor told me that once he was joking with Alessandro who was sitting on a mattress for gymnastics: Joking he said “ Now I’ll squash you,” and pretended to put his foot on him.

I noted that immediately, N:  (the Sardinian boy) appeared in front saying: “ To squash Sandro, you’ll first have to get over me.”

One morning one of the lady teachers wanted to speak to me. She was very concerned because in a nearby school, (in the vicinity of the river Tiber)  a boy with the Down syndrome, escaped from school, fell in the river Tiber and was drowned. She confided her worry for Sandro who always moved around the corridors. Alessandro was near us and said    “Hey, I know that –stupid me to throw myself in the river!”  ( my boy could only have fallen in the river if  he had been thrown , and seeing it was necessary to get to the river and how could he have done that seeing there were steps and he was not able to go down them?

At that time Alessandro could walk although he wasn’t able to get over obstacles. We went frequently for walks. He began to notice when he was about 13 that others were looking at him in a different way, and he started to call out to them “Why do you look at me like that?” We naturally tried to play it down saying, “yes, they are also looking at us , they see we are nice.” Then he changed to saying only “He’s looking at me.”, and later on, when someone looked at him more intensely , annoyed, he spat in their face and said, “Don’t look at me.” Naturally, although I understood him and  his reaction, always told him that one does not do these things.

If by chance he heard someone say that he was disabled, he said to them “ It’s you who are disabled, I’m fine.”

 

Age eighteen

 

At this time during the summer Sandro  went to one of these centres where you could swim , tried to go into the pool, and despite his fear found courage to do so because he was with his little friends.

During the winter of the following year the doctors advised us to let him swim.

We wrote him in therefore in the same sports centre we’d attended during the summer. but the swimming teacher, a blond boy, very kind and muscular, said we parents were not allowed to help. We must remain behind the door to watch. Alessandro was left to stand for some time then I called the person in charge of the centre who said in an unpleasant way that he was disgusted to have to give lessons to  a child of that type.

You can imagine our delusion. We felt like beaten dogs. For all these years I have asked myself what sort of an end this blond boy had  and mostly  if his life had always made him smile Did he ever have to overcome difficulties and if so, how?

Despite everything, Sandro was always ready to smile and also if with great difficulty he did the school work he also managed to socialize and memorise entire sections of polyphonic music (Mozart, Brahms, Pier Luigi to Palestrino) even  in Latin and German.

He was always a polite little boy with the little girls. I remember he used to give a slight bow and kiss their hand and at times gave presents of flowers or chocolates, managing this way for everyone to like him But as they grew up the children avoided him.

For example they didn’t invite him any more to their celebrations or birthdays as was usual preceding years. On the rare occasions he was invited, at the moment when he had difficulty in eating he would bring home a few of the party sweets to eat alone and so not upset the other children

It was in every way a great pleasure to take him out with us. To the best places and to see him eat with a closed mouth and a fork and to wipe his mouth in an educated manner and not let anything fall on the table cloth. It was a pleasure for us to see how good his  behaviour was. We were really proud of this, much more than parents of so called, normal children The time of the feeding tube and the bottle were by now far away.

At school he was nicknamed the earl  and in the summer camps he was known as little chocolate because of his sweet nature and his suntanned colour. 

I always tried to dress him especially carefully but nothing was able to improve his looks.

Naturally we have never neglected the search for the illness that could have affected Alessandro. We circled constantly round the most varied centres of research, from the old ENPAS – Mendel at  the Gemelli policlinic, putting him in for analyses, that also came from abroad, from Germany and America. Every time I heard of a medical luminary in Italy I took my son immediately for a consultation, but without ever getting a reply to my question. 

Since he didn’t sleep the neurologist proscribed half a pastille of Mogadon to be taken each evening.

In the beginning he rested better even if it was followed by having night time apnea  which were for me and his father a real nightmare. We tried to sleep as little as possible and were always very observant of his breathing.

During the middle school on the advice of the neurologist I took Sandro to have physiotherapy and swimming in a religious therapy centre; believe me it was truly a stressful life. 

One rose early in the morning to wash him, dress him, take him to school, go to work, rush out to get him and feed him, go with him to another part of Rome for the therapy. I spent hours and hours in the car.

Despite this our life went ahead. we were able to do a bit of everything, even the singing tests for the choir, to give concerts in the churches or at Campidoglio etc. 

In the evening I went to bed late  since I also enjoyed painting, sewing and other little manual jobs  I put myself in front of the television, with Sandro always near to going to sleep or better, he dozed and I relaxed a little. There was then the office which I could not avoid so I tried to do my work equally well. I avoided being absent even when I had a fever ,not to fall back on other colleagues, outside my problem.

At that time there were no recognized special permissions for parents who had to help their sick children.

Age 18        1986    Military call-up

 

Naturally Alessandro also got the card to attend the call-up interview.

This day for us was very, but very sad..I knew that unlike many many other young men  his mother had to go with him to the military interview.

Since I worked at the ministry of defence I went at once to the call up office people to find out if in my particular case one would be able to follow a different procedure. My colleagues in that sector suggested that I speak with the medical officer. After a long wait I managed to get an interview with the official to whom I explained  the situation in which my son found himself. A situation that was verifiable at the ministry  office where I was employed in a responsible  position. I also showed the numerous clinical cards  and researches done, but after a quick look he still confirmed that I would still have to take my son to the call –up interview.

Alessandro had slowed down his way of walking and moving and had started a treatment based on medicine for his heart (isoptin and Capoten for hypertrophy of the heart) Moving him was very difficult because he could not help himself it made him even heavier to move. 

So, the morning of the visit I presented myself with my son all the same at the same official with whom I had spoken at the ministry, and he, after having seen my son, told me I must go up to the next floor with my son for a medical visit. There were no lifts so I asked for the courtesy of a doctor to come down for the interview. In fact a very young doctor arrived trying at once to reassure me, saying “ keep calm madam I will see that your son will be discharged and will not have to do military service. ”Well! if I was sure of one thing  it was certainly that! Instinctively I wanted to smile instead of crying because I could imagine the scene, Alessandro with a rifle in his hands that was heavier and bigger than he was. So I replied sarcastically, “What a pity. I really hoped you would have accepted him!”

The young doctor  at the moment of digesting the request for this visit, after having seen Sandro and having given a quick look over the various clinical cards, said to me “madam, please tell me what I have to write because I don’t really know how to begin.”

Since at that time nothing was known about Sandro’s  unfortunate disability. Their diagnosis was simply Multiple malformations, enlarged tongue (macroglossia) and Micromelia. 

After a few days the card arrived saying as confirmation that Sandro had been discharged as unfit for military service.

Age 18 the military camping place

That year we got to hear that in a military airport near Rome they had opened a beautiful camping, so in the spring you had to put in your request (it was reserved for workers in the ministry of defence according to your points .) Naturally we would be accepted, it would be fine for Sandro to spend several days at the sea, and also help his breathing. 

I tried always to dress Sandro in the best way possible ,buying the nicest clothes in the best shops in Rome So I chose for him modish clothes really to make his outside appearance better.

We tried in fact to present him in a sociable manner ,extremely clean well brought up and affable.

In august we went on holiday with the caravan as we were used to during the summer.

We went to Sardinia for a holiday of 20 days. After the return crossing in the late afternoon we went at once to the airport camping to leave the caravan parked.. At the same time two other families with caravans arrived behind us. Together at the entrance gate we made ourselves known as usual but the military guard announced without any warning or giving any reason, that we were not allowed in.

We parked the caravan temporarily in an angle outside the camping and asked to speak to someone who could explain why we couldn’t  enter .At my request, however, the same military man who had refused our access  told me with much embarrassment it wasn’t possible and explained almost in a whisper that perhaps the problem arose because of the state of the boy. Then almost to console me he added  “You know, Madam that in the end they are going to move all these caravans away. ”Believe me, although we thought we were already used to such things we were very, but very unhappy.

We found ourselves at this time of the evening, tired after the crossing and not knowing where we could leave the caravan. What a sad experience!

The next day we phoned the direction in charge of the Air ministry and spoke to an official about my disappointment but he also replied that soon they would have to remove all the parked caravans.

If you feel like taking a walk to see the airport you will find the caravans still parked there like many years ago.

19 years.

When you are young you have no idea of what can happen to you in life.

I was alone. My brother lived in another city, my sister worked all day until 9 at night, so it was left to me to find time to do everything .However, luckily my father came out of a coma and with great personal strength started to eat, so  he was put in for rehabilitation therapy, so I searched for a clinic to take him to.

My mother, less fortunate  died after a few days. For me it was quite unexpected, as if I had not realized how sick she was. She didn’t have the habit of complaining, but perhaps she hadn’t the strength either, and in my heart I couldn’t believe my mother could die, perhaps because I didn’t want her to., ever.

After several months passed in rehabilitation  the time came to find some form of care for my father since he could not live alone any more. In the end I took him home with me taking on a woman to look after him

I had to put papa in Alessandro’s room. Think,  there had been two years before we could get Sandro to sleep alone in his room! Sandro took this very badly despite not liking to sleep alone.

 

Nothing

 

Seeing the situation that had created itself we decided to take over the house that used to belong to my parents. because it had two bedrooms more than our house had. We restructured and transformed it. The house was situated near the Don Gnocchi rehabilitation centre, Sandro’s actual school and the good thing was this nearness that cut out all the time we’d spent getting there with all the Rome traffic.

Sandro at last had his own little room and an adjoining bathroom beside grandfather’s bedroom. At night if he needed the lavatory he got up himself and returned to bed alone. I always slept very little being preoccupied with his breathing problem. The greatest break was between his aunt and the two little cousins.( in the meantime little Simone had been born) he said regularly “Mama buy a house near my aunt.”

We moved to the new house in August and in September they announced that Sandro could not attend the Don Gnocchi any more.

For Sandro there was again nothing to do: a complete vacuum.

The physiotherapeutic centre for the handicapped that Sandro had attended had transformed itself into a training centre for handicapped children. Sandro was thrown out. A training centre was where invalids could be taken, for example. but only children with limited handicaps who would be able to learn to use personal computers, thus they would have made a better impression in the eyes of the critics than Sandro, who was therefore kept out.

Later  it was realized that that which was to be a big and important centre for teaching computer technique was a miserable failure because as was obvious, the so called intelligent and almost normal did not go to the same type of school as the handicapped but got themselves enrolled in normal schools along with the so called ‘normal’ students.

I found myself, therefore having to look for another centre, day hospital, for Alessandro, we who for years had tried to integrate him with normal children were forced to contact a centre for handicapped adults.

We tried to go to Don Orione, another well known religious institute for boys with problems, After a series of private visits, questions and certificates, they assured us that Alessandro would be accepted there but not immediately because there was not a vacancy, They calmed us down however saying that the waiting period would probably be short because these boys with some handicap died young. You just have to wait and in a few months there will certainly be a free place for my son.

Very sad, don’t you think. I came to think of a comparable situation that as soon as my son was accepted, how many other parents would there be waiting for him to die to make a place for their child!

For we who worked, keeping  Alessandro at home was a serious problem. Also the woman we had taken on to assist my father wasn’t able to come any more because of the distance to our new home. We really didn’t know what to do

We tried to ask at the USL in that area if they could send us some social assistants While waiting for a reply we managed as best we could ,falling on the help of my mother in law  for several days per week while for the rest my husband and I took it in turn.

With a heavy heart we went to look for help from the community of Don Guanella, also a big religious institute for very gravely ill boys and adults

The building was very fine and well organized with kind and capable staff, but the sight of all these invalid adults made us terribly sad. I tried to console myself by thinking that Sandro would only be here a few hours in the mornings. We followed this and waited for a reply.

Sandro began ,however to have a change of character .He wasn’t the lively boy he used to be. He was alone in the mornings with his old invalid grandfather who moved around with his walking frame  and with my mother in law who was herself not so young any more .We tried in the afternoon to get  him off from this solitude, always taking him around, taking him to celebrations organized by our friends, We gave parties to keep him among company. We went regularly to the polyphonic choir and gave concerts. Sandro always came with us. He waited for my return from the office and said “Come on, let’s go!”

During the summer, between the holiday places for invalids and our summer holidays he managed to keep busy and content. By now everyone knew him and we also made new friends.

All this included thousands of medical controls and clinical controls.   .

On his invalidity certificate instead of ostiocondrodistrophia (syndrome of Hurler?) they indicated mucopolisaccaridosi, condrodystrophia, distrophia, oligophrenia grave.

At the age of eighteen, having been recognized as an invalid by the USL (health service) Alessandro was put in for another control visit because he was now classified as an adult and after a year had passed he was recalled for a further verification. Who knows, perhaps they thought he had been cured in the meantime!

Our requests for a social assistant continued but without any positive result, until somebody from the USL (a social assistant) I remember clearly, noted that ,after all, the boy was our son and therefore we should have been responsible for him. I remember that my husband in a fit of anger replied “Yes that is true but the state is preventing me from doing away with him.”(killing him).We obviously never did this but the desperation was great.

Sandro began to be sick frequently. He  regularly had a cold and did not lack bronchitis, and consequently, day by day his character also got worse.

I thought to turn to the province for help and finally they assigned an assistant to my son for several hours a week. But at least that was something, or so I believed.

After a few days my husband and I realized that the workers of the    cooperative of the health service, assigned to help my son, were themselves more invalid than he was. Sandro, while having movement problems, had a brain that functioned well and understood everything. When we parents came home he told us everything that had happened that day and my father confirmed that it was true.

We came to hear that an assistant had the bad habit of leaving the gas on, unlit, risking suffocation  .In fact then ,having had a good look at him and exchanging a few words with him he gave the clear impression of being a retarded boy. I complained therefore to the cooperative who in turn confirmed that the one assigned to me did indeed have very serious problems, and in need of help. Seeing that we also were not without problems I asked for them to send me a new assistant.

Thus came a girl but this one also, as far as strange behaviour was concerned ,was no less than the previous one. Alessandro told us that as soon as my husband and I had left  she closed all the house shutters, put Sandro to bed and slept until 12 when my father wakened her up and told her to warm the lunch up again.

Almost with joy we got the message from Don Orione. Thus we completed the civil and medical  certification of Alessandro and had a final visit with the teachers and the psychologist who would have to follow Sandro

On the Friday afternoon they said that on the next Monday Sandro must be at the institute for his first school day.

Punctually the next Monday we presented ourselves, but after hours of waiting outside a door that never opened we were told that all the entrances were cancelled by order of the magistrate  and that certainly they would have called  us as soon as possible. .I let my arms fall. We had circled round and spent a lot of money uselessly  for all these visits to have him enrolled. I am still waiting for that call! Perhaps the place that was for Alessandro was given to another more recommended boy.

Since the assistants sent to us by the USL were not reliable we continued to ask around for an alternative solution.

We came to hear of a centre  the ANAFIM reserved for children of workers in the Ministry of Defence  (where I worked) which would accept Alessandro with joy. It was small, with few children. We would be able to make use of it for a few days per week, then it would be necessary to get help at home

Needless to say, even Sandro was pleased and the positive part was that he would be able to have some physiotherapy

At this time we were forced to interrupt our choir visits as we were too tired.

During the summer Sandro continued to go happily to the physiotherapy centres of Anna Verdi always by the sea. And I also took turns in looking after them several times because everyone wanted them to have a good time there. Also we could relax knowing the people that were taking care of him, so my husband and I tried to go to Sardinia for 15 days alone, naturally after having arranged for my father to stay in a private holiday centre.

For reasons of organizing and economy the USL stopped even the little home help it had given, so we only had the assistance provided by the Ministry of Defence  but only during the winter and in school time. The summer was still a problem.

We tried again at Don Guanella with various letters from the hospital and our parish, where Sandro was known by his frequent presence so we were able to get him accepted for a test period of six months. For us the Don Guanella was distant and inconvenient. Frequently it was my husband who took him in the mornings and spent the afternoons collecting him.. This place gave me much anguish and also Sandro because he never knew just when we would arrive. .I remember that we always found him ready to go, but while he was at the other schools he never wanted to go home. Here I saw him, inserted in a group of handicapped adults, some already with white hair and no longer with babies and children of his age so he could socialize. I took it very badly.

I arrived there only at 3 o’clock when the boys were resting in a huge dormitory in the half dark .Sandro remained seated on his bed, waiting and sometimes we found him standing beside his bed. What miserable boys. To think after having tried so hard to keep him with so called ‘normal’ people  so that he could socialize I had to resign myself to the idea that this in fact would be his life.

Sandro stands still.

 

The holiday time came and Sandro left for his holiday at Santa Severa with his same group of friends. There was also the person responsible for them, who had become a real friend of ours, very fond of Sandrino

In contrast to other years my husband and I did not go to Sardinia, partly so as not to leave Sandro alone and also because we had not found a place for my father in a clinic for physical re-education, and so could not leave him alone, also because I had a strange presentiment. Recently Sandro had suffered frequent headaches.

For several years Sandro had been on the therapy of calcioantagonisti  as they had found a

Hypertrophic cardiomiopathia characterized by obstructions to the flow in the left ventricle, of a moderate degree.

As always when Sandro went to the holiday place we stayed home in the evenings even when it was hot in case of an urgent telephone call.

One evening about ten p.m. they called to ask if it was usual for Sandro to take a nap after his supper. We replied, yes. In fact it had happened that after eating in the evening he had fallen asleep in his chair. We thought that since he had a bad heart he had tired through eating.

They said that his blood pressure was 80/50 and while on the telephone it had dropped to 60/30the doctor at the holiday camp said it would be advisable to take him to the hospital at Civitavecchia.

We lo left for Civitavecchia sure of finding him awake but  things were not as we had thought.

I fact we found Sandro in Reanimation, since he had become comatose. He responded only with slight movements when the pain stimulus was applied. The suspicion was that he had had a stroke(Then it was not yet possible to confirm this with a TAC.)

Seeing that Sandro was a heart patent and in the past had been diagnosed with suspected  mucopolisaccaridosi (At that time the syndrome of Costello had not yet been identified), the doctors at Civitavecchia to give him a drip with only sugar and water, without any therapeutic urgency.I remember that they said as advice “It’s better to let him sleep”.

Naturally we decided to take him away at once. We couldn’t stay watching them doing nothing for him If he had to die it would not be through our indifference. Thus with the help of the doctor at Reanimation, we first phoned the red cross in Civitavecchia, which however only had one ambulance free and it was not able to leave the city.

So we contacted a private ambulance which took us to the first aid at the Gemelli in Rome where we arrived between 12.30  and 1a.m.

After the visit of a paediatrician and neurosurgeon ( to whom we said at once that he had a suspected mucopolisaccaridosi and that they must also pay particular attention not to touch the two vertebrae under his head which had become joined together after an x ray done several months ago because they could have risked him having a cardiac and breathing arrest ) Sandro was admitted, immediately put on a monitor and aspired with a tube through the nose.

His father and I held his hands, and although in a coma he rebelled against the tube and raised his head becoming immediately black, purple black and everything about him changed becoming immobile In that moment the monitor  began to give a long uninterrupted whistle.

He had a cardiac arrest.

 Terrorized, his father and I immediately left the room and waited.

He was taken to the reanimation room where he was reanimated. They told us that he was in a deep coma and probably had suffered a stroke in the little ‘encefalo’  (tronco encefalico) and if in fact the damage had been there, It would not even have been possible to correct it surgically.

At 3 o’clock a TAC was done and half an hour later the re-animator took Sandro to the reanimation room and told us to wait.

Shortly the re-animator came to us and asked angrily if we had never in the past seen that Sandro should have had a cerebral TAC.( brain scan) We replied that for years he had been under their control at the Gemelli so we should have actually put this question to them. Hearing this the doctor changed his approach and apologized, confirming that Sandro had a hydro -cefalis, probably since his birth and this could have stunted his growth.

We begged the doctor to do everything to save his life, as he would have done for a ‘normal’ boy because we wished him well even if he were like this. He assured us that he felt just like us.

The next morning we went to the biologist at the research centre, contacted many times in the past because she was our contact with the hospital even though this was not her real work

We put her up to date about Sandro’s condition so that she could find out directly from her colleague re-animator how Sandro was.

Shortly after she had spoken to them she returned to tell us “Who knows how it could have gone if they had  done a TAC ten years ago! They could have improved his quality of life?”

After a cardiac consultation Sandro must be operated on as urgent.

During the morning the biologist and the cardiologist spoke with optimism because Sandro’s heart was beating well and this also influenced his brain. They would be able to do it.

.About 4.30 in the afternoon Sandro was operated on and they inserted a parenteral cerebral deviazione  

We never heard who had operated or how it had gone.

 Our biologist friend had to be away from Rome for 8 days so for that time we lacked our only contact with the hospital doctors.

We went home for a few hours: at dawn next day  we were already in the hospital , and only about 10.30  somebody said that Sandro was still in a deep coma. We had to wait to see if he would waken up, also if according to them this was very unlikely since it is difficult to get out of a profound coma

At 2p.m.( the time for a reanimation visit.) I saw him through the glass. He was unmoving with the mask over his face, the drip, tubes and wires everywhere.

 At 3.30 they said his condition was stationary I decided to go to him, spoke to him and at once he turned  and tried to raise himself.

The next day they tried in vain to insert a tube through his mouth, on the other hand he  stood in risk of another cardiac arrest so they decided to do a tracheotomy ,which they did.

All this time we were behind the glass window. One still heard the frightening sound of the breathing machine in the hope of not hearing that long whistle of the end of the heart beat. 

Finally several hours after the intervention he became conscious and with all  his strength tried to sit up to see beyond the glass, and catching sight of us signalled to us to come in by a movement of his arm to which they had fixed the drip..

I remember that instead of the face mask during the previous intervention he just had a  bladder catheter and a tracheotomy.

The next day he was transferred to the ward. He was already able to drink water unaided.

 It was one of those extremely hot airless days of summer. Sandro was put in the smallest hottest room they had, without any air conditioning. There was already a young patient of 20 in a bed there  who was suffering from mucopolisaccaridosi whose breathing was very loud and who complained continually.

 There were four or five boys  put together in the ward  because the rest of the rooms were closed. Alessandro had a great desire to get better and was already able to walk to the lavatory and drink unaided.

Problems however were not slow in arriving, in fact it was necessary to aspirate catarrh from his trachoma with an aspirator. I had never done this nor seen it being done. About 5p.m. when they took his temperature it was 38° but they told me this was attributable to the various tubes and canulas and that all was normal-

 During the night they also changed the canula because the one he had did not have a cuff or a return canula. .You can’t imagine the pain Sandro felt .At the moment they positioned the new canula he put his hands over his face as if to say “Mamma mia”.. It is the most horrible sensation a mother could have to see her son suffering without being able to do anything to take his pain away.

Then two days later apart from a temperature he also had a headache for which they did another brain TAC. .Everything seemed in order apart from a small clot of blood, caused by the intervention. One or two days passed; the production of catarrh increased and was reddish in colour. One night we had to phone the doctor on night duty several times  because Sandro did not seem to be breathing well, but the doctor reassured me without even a visit. Sandro was not on antibiotic therapy because they said  the temperature was a part of the post operative state.

In the morning his breathing became worse and finally the doctor visited him and contacted the reanimation. They immediately did an x ray of his chest and said he was full of catarrh (or so they thought)

After a few hours however, suddenly Sandro suffered a cardio respiratory arrest, and after being reanimated, they began antibiotic treatment through his veins. I remember that since there was no place in Reanimation they put him in a ward there, assisted by us parents.

So another day passed and another night of stress. Sandro seemed to hang between life and death, with his father and I always near him, aspirating him and keeping him continually on oxygen. Every now and again he collapsed and could not pass water, frequently the re-animator had to intervene  to keep his vital functions going. Also it was easy for the drip to come out of a vein.

I believe that Sandro’s life was saved that night by the cardiologist on duty who checked my son, saying he didn’t have pneumonia, leukaemia or AIDS but probably a very bad infection, and put him on a specific antibiotic.

The next morning a re-animator said that for his breathing it would be better to return to artificial respiration while his heart was still strong and without the machine he would have died sooner. The respiration machines were all occupied so we called the Sanitary Inspector to see if would be possible to transfer him to the reanimation centre of another hospital. The helicopter for transport was ready but a place could not be found, And so time, seemingly long for us, passed.

By luck our friend the biologist came to visit Sandro, spoke with her colleagues in the hospital reanimation and they knew that by 11a.m. there would be a vacant place

In the meantime Sandro had managed to pass 200ml.of urine and in 2 or 3 hours had passed1000ml. and to our great surprise said he was thirsty so we constantly wet his tongue which had become huge he also opened his eyes and both my husband and I believed  that all would be quickly over. In the meantime my sister to whom he was very attached came in and when he heard her voice  he opened his eyes in an attempt to see her and his heart frequency at that moment increased. Setting off the monitor’s alarm sound.

It was1p.m. and Sandro had not yet been found a place in reanimation

Finally the moment came to transfer him and I begged the doctor not to cut off the oxygen because during the night in cardiology Doctor de Rosa had noted that Sandro could not manage without oxygen even for the few seconds  needed to aspirate him naturally the doctor reassured me.” Keep calm madam and don’t worry”.

 My sister and I, both desperate went down the stairs on foot while Sandro was taken in the lift, naturally without oxygen despite having reassured me, and while in the lift he had another cardiac arrest, so much that it was necessary to reanimate him in the corridor during the transport.

 After Sandro entered the reanimation  we saw the porter at the end of the corridor with the oxygen flask which should have accompanied Sandro during his transport and not afterwards when it was too late.

Later on we came to know that  he had had a heart attack in the lift without them knowing how or why ;They explained nothing. to us. 

For two days they said he was gravely ill, that this time he was in an anaphylactic shock, all the values were altered .he had had a hypoxemia following an acute pulmonary swelling.

One had to wait and see if his body would react.

The cardiologist on the other hand thought differently.: According to him my son had not had pulmonary oedema, also they stopped the Capoten to avoid further collapses.

After the 4^th day the cardiologist’s diagnose was confirmed. I went in to greet Sandro who although exhausted recognized me and I encouraged him to get better soon because there were many things we still had to do together ,remembering those things he liked best also I reassured him of our constant presence behind that glass window. He must keep calm, we will not move from there.

The next day however he seemed to me to be worse, in fact they had sedated him in an attempt which failed, to take him off the respirator

Just this day our friends from outside Rome would visit and  to see him like this will be very bad. All of us thought he would not survive.

In this period we hardly ever went home, either we stood behind the glass window of reanimation listening to those cursed sounds of the monitor, or sat on a stool.

So another four or five days passed and finally they were able to take him off the machine.

He tried at once to raise himself up despite having become very thin and weak.

I remember that a lady standing beside me  and seeing him there through the window ((apart from being thin he was naked), said to her husband “ Huh –Look, that is a monster!”- I had no idea how to reply to this. For us, parents, to se him move  made us happy, even as this lady said, he was a monster. I was sad, but not for what she had said but for her, because these beautiful feelings we had she could never have understood. Three days later Sandro was taken back to the ward, to the same little hot stuffy room..

They attached three different drips with Revivan to keep the arterial pressure under control, and other things. I didn’t go away even for a moment, wetting his tongue and lips continually, aspirated him, and cleaned the canula continually. The nurses rarely entered the room, and all with masks and gloves, so I became suspicious ,and asking for the reason got to know that my son had infections not very clearly specified. 

Alessandro had bruises on his body, One on his left thigh, one in the groin and one on his right shoulder

Behind his head there were crusts of blood

For days they continued only to give him Revivan but not with great precision so that Sandro passed from very high to very low pressure until several days later a doctor said  that he should absolutely not go above a heart frequency of 110.

In the meantime the drip came out of the vein and I waited whole hours for a nurse to come and replace it, I did not get to know why some of them refused to do it, not  exactly saying no but pretending to have forgotten and told me that those on the next duty would think about it. 

So I waited anxiously for the next one on duty in the hope that they might be  more willing nurses. For two days we went on like this  with Sandro remaining sometimes without food, without water and the saddest thing, without therapy.

I remember also one Sunday when a lady doctor (then on duty) from a different department, called to replace the drip, but on having read is clinical card, in her turn, refused, saying that Sandro should not be there. It was necessary to put him in another ward. 

All the assistants put pressure on me saying, ”Madam, seeing he is a heart patient, he should be in  the cardiac ward”

 I asked a nurse to do me the courtesy of aspirating the secretions of the tracheal tube. They, being professional nurses unlike me would be able to reach further down during the aspiration and I was still afraid. but nobody came to take on this task, on the contrary, one nurse said to me “if you aspirate him yourself-…” 

After a week of intravenous antibiotics based on Amplital his temperature was still high. Finally they did a blood culture which showed Sandro had an infection,  septicemia vaso dilatatoria, Perhaps contracted while in reanimation or connected to the infusion therapy So they gave him another antibiotic Glazidim

By now, Sandro had all the veins of his hands, legs arms and feet ruined by the transfusion treatments.

Now at a distance of time I know that the doctors suspected that my son had AIDS. Now that explains the behaviour of certain doctors and many nurses, reticent to give the necessary treatment to my son for fear of becoming infected. At the same time, I appreciate more than ever those more courageous and conscientious who did not hold back., especially the two or three nurses who changed his catheter knowing that the others had not done so, without saying a word to me.

Successively they had to revert to feeding him  through a nose tube to his stomach which Sandro could not tolerate due to frequent stomach ache. A nurse told me to ignore his protests and to carry on despite it all. I told her that Sandro was not a type of child that complained uselessly  nor was he mentally retarded as his measurements would suggest. Therefore I  could never do anything to cause him pain.

They changed the tracheal tube. I thought they would insert a smaller one but instead it was just the same size.. Then they tried to remove the stomach tube, but realizing that he had more than a meter of tube(Sandro measured 1.29 meter round.) and that made one think he had a stenosis  that stopped the tube from entering. further.

During the attempts to remove the tube Sandro had difficulty in breathing for a few seconds longer than usual. but that I thought, was because the tube was too long and so took longer to insert. Sandro therefore held his breath until the tube was in place. But this they didn’t understand and were scared so they gave me a new tube saying “You do it. We aren’t going to insert it.”

Desperate, I said to my son “Sandri, we’ll try to see if you can eat alone so we don’t have to put this awful tube in any more” For better or for worse he began to move his tongue which was as dry  as if to bleed. .He managed to eat a little plain pasta with some soft cheese. The next day it was he who took the spoon from my hand and ate rigatoni pasta and everything with it with an excellent appetite. After five days of eating alone they did an x-ray of his chest which came out as ‘clean’

One day we consulted the ear and throat doctor to see if it were possible to close the tracheal cannula,. He said it would be necessary to get the permission of the neurologist and the paediatrician In any case he suggested we try putting some sticky plaster over the hole to see if he could breathe  without it.

Then the third control TAC was done and an electrocephalogram The TAC showed a small quantity of coagulated blood, possibly the cause of Sandro’s continued headaches The neurosurgeon which, apart from the other, was the first I’d met  since Sandro was operated  told me it would be advisable to repeat the TAC after three months. the pressure values were not stable, The maximum was undesirably high, at 160/110  but at the same time it fell to80/50 ,mostly after meals. The  doctors reassured me that all was normal.

The head of the department reaffirmed that Sandro could go home ,naturally still being aspirated but we had to wait for the ear throat doctor to return from holiday to get the permission to close the tracheal  cannula. But the days past and we saw nobody. My husband and I were exhausted. For whole days and nights we had assisted Alessandro without the possibility of a brief rest. there was always something to do: washing him, aspirating him, giving him a drink, or something to eat, measuring his pressure also during the night with an ear always open to hear his breathing

 The morning of the 15 August state holiday, we were the only ones remaining in the ward along with two little patients.. Passing the time of day with Sandro was difficult  as he had trouble trying to talk with us because of the open hole in his trachea.. Nobody could explain what he had to do. He however with his great desire to live started to get out his first words between breaths.

One evening we noted that his left hand that he normally used for eating was without strength. He couldn’t raise it  nor take the food to his mouth.

On 14 sept. 1991 we asked for an appointment with a neurologist but we waited uselessly for four days. Fortunately Sandro began again  to eat well alone.

The 15 sept.1991 the cuff round the cannula broke. Through the paediatrician we contacted the throat dr. who said that  Sandro would  have  been able to eat and drink in any case so the possibilities would be two ,either he would be all right or he would risk having a pneumonia caused by food entering the lungs.

He said however quite clearly that at this moment he hadn’t the slightest intention of replacing any tracheal cuff. and underlined that he himself had previously indicated the need for a valve  with a cuff and a window.

After a few days we went home with Sandro.

For a more accurate control we took Sandro  to the private studio of a pneumologist in the hospital Forlanini where they changed the canula , explained many things about breathing and the various types of canula, and very usefully they explained how one could recognize various types of lung infections by the sort of mucus coming from the canula.

After a tracheotomy

 

23 years old (1991)  after the coma.

 

As it would have been easy to see in advance, after such an operation the problems would increase while Sandro remained in hospital. My husband and I had used all the permissions and holidays available.

At that time there were no laws passed to help working parents of a handicapped child.

Somehow or other we must return to our work.

During  his convalescence at home we tried to keep Sandro in the most hygienic condition possible because of his tracheotomy On the advice of the throat doctor we left open the tracheotomy passage As soon as Sandro was stabilized We recontacted the centre Don Guanella. Given his particular condition they will give him a medical visit, taking count of the fact that Sandro had need of the greatest medical care and someone capable of changing the canula when it became dirty. Looking back, they confirmed that since he had had the tracheotomy he hadn’t been able to attend the centre because it would have been necessary to have a person looking after him alone and that was not possible.. We agreed with their decision knowing it to be true that they had patients much worse than Sandro, but as they were confined to bed, fewer nursing help was needed. So we returned to the Don Gnocchi institute where Sandro did breathing exercises. After various medical visits, some after payment, they let us know that they didn’t know how to fit in a boy with a tracheotomy.And remember, Don Gnocchi had an orthopaedic hospital department. I believed on the other hand that Sandro could have felt discriminated against and they could have resented his humour and character. (As a reaction he could have become more bad tempered with us.

What was the logic, medical and human that guided the conclusions of these doctors psychiatrists and psychologists? Would it not have been worse for my Sandro to remain alone at home, to die of boredom with an inexpert person? Would he have felt even more isolated, without even considering the economic burden of paying for a private nurse at home  

In the meantime we contacted a number of people who seeing Sandro’s  condition, refused even with the offer of two million lire per month ( at that time, quite a lot)

We turned to a non religious institute for invalids, the Vaccari, which took in also for the night, boys with grave problems, many in bed We would have been content with a limited help for a few hours in the mornings.

But here also we struck a blank. They said that an open tracheotomy was very dangerous for infection both for Alessandro and the other children.

Sandro’s problems (deviazion cerebroparenterale, canula in the  trachea, cardiomiopathia hypertrophic) Did not allow him to be exposed to cold in the winter mornings or  to the long journeys needed to arrive at the centres which would have happily accepted him, such as the Anna Verdi, ANAFIM, where Sandro had spent many holiday periods. Not everyone was insensible to problems of boys similar to my son.

 

Eastman

In particular he also had an excessive amount of tartar so we took him to a dentist friend  who had known him since he was very young and took into consideration his emotional state. and he was liked by Sandro. However because Sandro’s condition had greatly deteriorated we felt it was better to take him to Eastman, the institute specialized in dental treatment But here also ,having consulted the doctors in charge of the coma, that he had just recovered from, they refused to give him  a total anaesthetic for fear of the complications during operating and decided to operate without an anaesthetic; not even a partial one

The doctors asked me to come into the operating room so that I could hold him firm with my hands. He, quite conscious, showed great courage like a real man while struggling ,to collaborate as much as possible. I tried to appear calm , but among cries of pain and the inevitable great bleeding from his gums,I felt like dying; my heart was gripped by his suffering.

They tried to do it as quickly as possible, when all was done one wouldn’t know who felt worse, Sandro or I who had not been operated on. 

Is it possible that for these children everything that happens must  always be more difficult?

Other problems

Assistance

We tried to get Home help, previously suspended for a time and renewed for a few hours per week, only after months of letters and many  requests. We turned to the UFA, the centre for families with handicapped who sent us a number of conscientious objectors, managing thus to have a guaranteed help during the five mornings a week when I worked.

Sandro now walked with his walking frame which gave the most security because of his tired heart. I put it in the corridor  for him to walk further, also as my father walked with  a walking frame believe me   it made one laugh and cry  in turn.

In the morning before going to the office, while I quickly prepared the mid day meal and tried to organize everything for the day I got myself between the two  with walking frames that squabbled together I could only say “You are doing fine, be good!”

My father behaved like a child putting his tongue out at Sandro and pestered him while I moved around, Sandro never let himself be pushed around , so replied by swearing. At table there was always a fight.I could only say “ Enough from both of you -.have you finished?” During the morning I asked my father to be patient with Sandro because  he suffered most.

I asked sandro, on the other hand to be, in turn, patient with his grandpa because he was old and badly off without his  little wife.

But it was no good. They continued to go for each other .If however they were separated for a few days ,they couldn’t bear not hearing about each other They telephoned continuously only to say hello and tease each other.

For some years there had been a succession of boys as house helpers, Some who we remember with joy and pleasure and to whom Sandro remained attached also after their period of help with us had ended. There were others however whose memories  we would like to cancel.

I remember one in particular who ate and vomited continually, not only that, but he took Sandro for walks in his wheel chair and went into the food shops, mostly bakers to beg something to eat, pointing at Sandro but in fact he ate it all himself He didn’t think that Sandro could tell us everything.

During the summer Sandro did not go to the holiday centres. We took him with us up to our mountain village but we also went all over the place, as far as Triest and Venice, but more often we were in our little country house near Bagni Di Lucca. Sometimes my father also came with us.

Sandro was even more attached to me especially after bad hospital experience in 1991. He slept in my bed because I frequently had to change the return canula.  I noticed however, that after the correct positioning of the tracheal tube that Sandro slept better, had less apnea at night and managed to sleep a bit longer, nor did he wet the bed at night, but he continued with his habit of waking about midnight and at three a.m. when he’d ask me “ When is morning coming?” He was always waiting for the morning.

In the morning after breakfast he preferred to remain in bed for a long sleep.He was calm and didn’t ever seem to have the apnea.

I the summer of 1994 my father was not very well so we decided to leave him in our house in Rome for twenty days being cared for by a good Columbian family. When we returned from holiday we found father in hospital and thought he might have had another stroke, but they had diagnosed a tumour in his stomach  and after two months he died.

Just to think that they had done all the control analyses a few months earlier and it seemed that all would go well.

Sandro took his grandpa’s death very badly There were occasions one liked to remember. One at least I must tell you about.

Having died at home, we laid his body in the coffin in a room with flowers and candles round it as was customary.

Sandro sat himself on a little chair and wanted to stay for a time to keep his grandpa company, and to let one know that these boys are special.

The morning before the closing of the coffin, as was the usual religious procedure, the priest was called to give the last blessing. We were very few present; Sandro, my sister and my husband and I and naturally, the priest, who in a sad and solemn whisper led the prayers.

Unexpectedly in all this silence came the loud crow of a cock –“Chickerikee, chikerikee.” You won’t believe it but we all began to laugh. 

Sandro was wearing one of those watches that had an alarm the crow of a cock and by chance it had been programmed for this time.

Immediately realizing what had happened he tried to cover the watch with his other hand to stop it crowing.It seemed like a scene from a comic film.

 

birth syndromes.

In 1992  Dr.Z..asked me if he could make some x ray checks on the boy. I was not willing since he had already been exposed to an excess of radiation. I begged him rather to tell me what illness could have affected him now the suspicion of mucopolisaccaridosis by now at age twenty-three had not been confirmed.

I promised to help Dr.Z  in his research.  One repeated Sandro’s story with old and new dates of analysis and in general explained all the things I’d noted, as a mother, during all these years; most important, the glicemia which was nearly always under normal.

One noted, moreover that in the two months that he had a drip containing glucose, sodium, calcium etc.  his nails grew a lot and his skin looked better, particularly smooth.

One day after intense research, Dr.Z. let me see the photo of a baby girl, described by a certain Costello and published in a medical journal. Her hands and certain parts of her face were equal to those of Sandro, so he asked my permission to publish the photo and story of Alessandro in the same medical journal.

So I gave him medical analyses and photos of when he was little.

In 1993 it was published and after a short time we knew that there were other children (Italian and foreign) with characteristics the same as Sandrino

This filled me with joy because finally we were not alone and neither were all the other children spread all over the world 

Sandro was not the only child to have these malformations. There were now children like him. One could see on all of them the same differing from normal children

I was satisfied and hoped that with time something would come out that would help Sandro.

At last there was a diagnosis: my son was affected by the

syndrome of Costello.

 

His father becomes a pensioner

Remembering the experience passed in the company of the Military objectors and the various helps from the U.S.L. and not having grandpa at home any more, who  for better or worse kept an eye on the house in the mornings, my husband reluctantly decided to go on pension.

He was director of a main post office , and after many years spent in state service, satisfied with his work and not yet old enough for a pension.

Seeing that my husband was now at home we decided that we could give Sandro a real puppy.

He loved all animals. There were few things one could keep in the house: little birds, a kitten, a cricket etc. For Sandro now always more alone a dog would seem the perfect companion.

After various periodic controls which gradually showed a worsening of his cardiomiopathic hypertrophic obstruction, since September we had done nothing but entering and leaving hospitals.

We entered because I thought Alessandro’s heart was getting worse and his feet were swollen, not only that but his testicles also, especially one, and he urinated frequently and had a slight temperature.After only twenty days he came out with his testicles less swollen. It had been an infection of Escherichia, curable with a little Bactrim. They increased a little the therapy of Isoptin and began to take E.N. 

Since at this time Alessandro was fine as far as his infections were concerned but always worse with his blood pressure and the effects of cortisone, I asked the hospital doctors for the thousandth time to do something to find out why; not easy, since so little about the syndrome of Costello is known.

After a few days they told me it would be necessary to fix a Holter pressure machine on him but that would mean 2-3 months wait for one at the hospital.

So we decided to get a Holter pressure machine from a private clinic ( on payment one got it the next day) I noted at once that as I had said for years, his blood pressure rose during meal times, and having eaten it dropped to a state of collapse. If this had been caused by a ‘wandering reflex’(riflesso vagale), before the meals the pressure should have been normal, and during eating gone down due to the vagal reflex and not gone up

 The results we got were as I had thought, so I put them on my P.C. arranged so that beside every measurement could be written exactly what Sandro was doing at that moment.

From the programme arranged this way one could see that in the morning his blood pressure was always high and it was enough that he should eat for the blood pressure to fall. Naturally the lowest points were at night. During his frequent stays in the hospital in the past I noted that during his night time blood pressure checks with a monitor, when my son also had  the only night time apnea,  his heart beat dropped in frequency,

This collected information I took to Dr. Z. and to the lady professor R. who immediately realized (as I had always sustained) that it was very likely that the varying blood pressure to which Alessandro was subject was caused by bad functioning of the surrenal glands –or who knows what other cause, but certainly not due to a ‘vagal reflex’. As always I asked them to do something to find the effective cause of this imbalance my son had suffered since he was little.

In February Sandro had the Holter pressure recorder (always privately obtained) and a heart monitor. During the night a polisonograph was also in use. At the moment the blood pressure reached a high or a low point a blood sample was taken. I don’t know what was being researched, whether it was cortisolo (cortisone?) or creatine.

That type of investigation could have been of great help in diagnosing my son,  but however for different reasons, most of them due to various doctors I wasn’t able to learn much more than I knew in the beginning and my son’s illness always remained a hypothesis. 

These however are my conclusions

April 1998

 

Because of the various lung infections that Sandro was subject to we frequently went for a short stay in our little country house 850 meters in altitude. Finally in April 1998 we were able to get away for a few days.

The weather was glorious. Our little garden was all in bloom. The melanderia roses covered the rose branches beautifully. The tulips were all in bloom with the nasturtiums, crocus and snowdrops and anemones. All the little walls were covered with plants for rock gardens. the apple, plums and apricot were all in flower. In the morning the garden was full of blackbirds and other little birds looking for food. The air was tepid during the day and fresh morning and evening.

Although I was always with Sandro, watching his every gesture, I hoped to enjoy, at least for a few minutes, my splendid garden.

During one night, however, Alessandro’s breathing worried me and on taking his blood pressure found they were both very high, also his feet were particularly swollen. I thought to give him half a lasix pill, but it had no effect. The next morning in fact his blood pressure was still high and during the day I had continually to change the canulla because there was an excess production of mucus.

The blood pressure slowed no sign of going down and Sandro was becoming nervous , I remember that he called me because I was beside him and when I came closer he scratched and bit me. It’s not easy to put up with these things, even if many times the physical pain is slight, and think that if your son behaves in this way it all depends in the fact that he is suffering and is not in fact, himself.

There were moments when reacting I felt like hitting him, but when you are on the point of doing it you painfully realize his behaviour is not voluntary, nor is there something bad about it, so one tries best to calm down one’s instinct, but because you are angry at this moment, you want at least to be able to cry out, shout, howl, just to give vent to one’s feelings, but suddenly you realize you can’t even do that, so pretending a great sweetness, you find you can talk to your son with love, trying to give in to everything he asks. Those days I remember in this way.

 The night was the most difficult time since his breathing seemed to be insupportable

 Considering the situation, the next morning early we packed up to return to Rome. Naturally, before leaving, after a last sad look at my beautiful garden, fixing it in my mind to give me the pleasure of its’ memory, also in Rome, dreaming to live it in the best of ways with lots of imagination, and who knows – I may enjoy it more that way?

In Rome things improved thanks to the Lasix medications.

During our drive along the motorway we thought of stopping at an ‘auto grill’ or ‘service station’ for a meal but Sandro’s condition made this impossible. He had a continuous flow of mucus and bad breathing, so we decided to eat something quickly in the car. That was a bad idea. The auto grill staff were not authorized to prepare food to be taken away and didn’t change their ideas despite learning that we had an invalid in the car. They reaffirmed that they had no food container with some snacks.

ptiriasi

April – may – june  1998

But round the corner there was already another nasty and tiresome experience

Alessandro always had a bad catarrh and we feared a new lung infection. However the X rays did not show any signs of particular gravity. There was catarrh but it could be treated with some liquidizer.

One morning while I washed Alessandro I noticed two small spots in his groin. After two days thhe spots had become 1/2cm. in diameter and after 3 days had greatly increased in size and 3 more appeared on his body.

My house doctor told me that without doubt it was herpes ( also known as St.Anthony’s fire) because the spots seemed very like chickenpox which he had had previously.

They at once gave him zovirac pills, but after a week the spots were not localized but covered his whole body. When I told the lady doctor she confirmed the diagnosis of chickenpox We continued with the zovirac pills and kept him warm

After 15 days he was completely covered in spots. No clear skin was visible after some thought we decided to take him to the first aid. We were tired of hospitals but almost by a trick of destiny we were always there.

Alessandro was taken to the infectious illness ward. It was not like a normal Italian hospital. The buildings were new and ultra modern

It was a Saturday and as was natural, this day and Sunday, my son was not given any medication, They only asked a lot of questions. Sandro was very stressed and in a bad state and kept hitting us. 

Also in the next room there was a mongoloid girl on her own, without relatives, who wailed,howled and talked loudly, babbled strange things. I clearly remember she was looking for her mother. 

In this ward the night was not made for sleep, not even for a few hours. Sandro was more and more hysterical and the skin on his body looked more and more like sandpaper. 

I had two types of cream with me, one based on cortisone ‘bebe’ and the other specifically for fungi Nizora. Seeing that the things the things they were doing for him (perhaps because he was not extremely ill) were really very little and I had to try to calm him down, so I tried spreading one cream on his left hand and the other on his right hand

The next morning I saw that on his left hand where I had spread ‘bebe’ the inflammation and spots were greatly reduced, while the right hand had not changed. This I told the professor during their rounds

On the Monday morning I went to tell Dr.Z.,  the lady Dr.R andA to transfer my son to the paediatrics isolation ward with a diagnosis made by the last professor I had visited.(a dermatologist) who had presumed a ‘non infective dermatitis’ called ptiriasi rosa ,giving a cream based on cortisone ‘Flubasi’ and Aspettamine for one day and night to see the reaction.

 The spots were fewer so he came home  but his blood pressure continued to increase. The cortisone cream was replaced by an emollient cream which after another 15 days showed no improvement in his condition, and in the hours Sandro’s blood pressure rose the spots became fiery. 

If the blood pressure went down the spots became less, so it was necessary to keep his blood pressure down to give the skin time to recover.

After about ten days the spots became a dark stain but always ready to flare up ifthe blood pressure rose. It needed another 15 days to calm down his faded dark patches.

 

Age   30

Sandro finally reached reached 30 years and he considered it a good milestone.

Like every previous year we organized a fine party on the banks of the river Tiber for many people. Sandro was always very happy to be surrounded by friends, and naturally with music. Because Sandro had a passion for music, for the last 15 years we always invited the singer Elio, who was a friend, to come to our parties, and he kept everyone happy with his splendid songs. For Sandro’s 30’th birthday he also dedicated a song to him and he was really happy!. The words went like this…..(See translation after end –‘Good night Sandro’)

 

 

Street Accident

 

July 1998

 

 

 

The ptiriasi Rosea  had not completely vanished. There were still several dark stains on his skin, so we decided , because of the great heat in Rome to return to our country house for a five day holiday.

 

I ordered a cylinder of oxygen from the house doctor so that we could help Sandro at once  if he had breathing difficulties. Naturally I also took my own first aid case complete with cannula, portable respirator, etc.etc., a travelling hospital in fact.

 

We left in our new car including a little seat, made to measure for Alessandro which was sufficiently high for him to be able, at last, to look out the window. This time, unlike the other times, we intended to arrive in the country at lunch time, and that would be fine because the country air was  splendid and the journey was reasonably comfortable thanks to the car air conditioning

 

His blood pressure was at once kept under control, and as soon as I realised the blood pressure had risen even without his feet swelling, I gave him a few drops of Nifedicor, this naturally when the high blood pressure was distant from meals or medicine. I worked in this way; If the B.P. was 200/140 in the morning about 6a.m. I gave him 3 drops of Nifedicor in a little water. At about 8.30 to 9 a.m. I gave him the same treatment for his heart, isoptin, and if about 10 a.m. the B.P. remained high, I gave him breakfast. During the day I continued with the same treatment.

 

If the B.P. was only 150/110 I I gave only 2 drops of Nifedicor with more or less water depending on the time near to meals or medicine. Believe me, it was quite a business and responsibility trying to keep everything under control

 

The breathing was good and no swelling of the feet was evident. Sandro needed me more and more to remain beside him. I couldn’t be more than a few metres from him because either the cannula was full, so he breathed badly , or suddenly without warning he would urinate or empty his bowels, then he would tell me to cover him up well. If he were in his wheel chair I had to do everything in a way that he could see me. He felt either hot or cold in turn, but the most important thing was that I remain close to him..

 

Then when I neared him he scratched or swore at me. All naturally between the anger of my husband who swore, cursed, and broke objects, which happened every time Alessandro got at him on his weakest points, such as his stomach ( two years ago he had an ulcer operation), or his ‘private parts’

 

 I did manage to do a little gardening, because I had found it all dried up, without flowers or fruit. The lawn however was full of green weeds and looked like a hay field..

 

One day we decided to go all three of us together to Lucca, about 30 km. away for a walk and to look at a few shops.

 

We had just got into the car, while I was fixing the safety belt on Sandro’s little car seat, after only a few meters at the first curve in he road, I felt the car was losing its control on the road surface. I asked my husband if he felt all right  and he said  “The brakes – The brakes aren’t working. I ‘ll stop against the trees”  I tried to hold Sandro so he didn’t get banged, and I felt a violent crash of the car against the trees

 

I didn’t even have time to be afraid.

 

I felt a sharp pain in my arm and in my right hand, but I had to hold on to Alessandro who was twisted towards me to grab me  and had slid down slightly.

 

 Alessandro, very scared, started to shout out “mamma, mamma” and to tremble. I was not able to release him because my hand was in pain. I had to be helped by Ubaldo who had got out in the meantime and was still shocked by the impact.

 

One tree was uprooted and the second fortunately had blocked the car which had finished with the back wheels suspended over nothing and all round was nothing.

 

My hand and Sandro’s leg began to swell up, so we decided to call our friends, always willing to help us, to get us to the hospital.

 

We went to the first aid in Lucca where they found I had a fracture of the fourth finger of the right hand, and Sandro a fracture of the tibia and peroneal tendon of his right leg.

 

They put us both in plaster with a prognosis of thirty days to recover. They did not send us away , seeing Sandro’s condition but decided to keep us in for at least a day and a night. It was very hot but in the plaster room the air conditioning was set for a very low temperature. We were given a private room but without air conditioning, which however was present in the public rooms without payment; one of the things I couldn’t ever understand.( was it really true?)

 

 We managed for better or worse to survive the night, managing to sleep for a short time , just enough to revive us. The next morning we hoped to leave.

 

I had seen, however that the mucus that came from the cannula was darker, thicker and more frequent, and Sandro urinated more often. We were allowed to leave the hospital but advised to keep in contact. With the help of our only friends Mario and Luciana, we went home and remained in this little village, lost among the mountains, without shops nor a car nor a taxi, in fact nothing.

 

Sandro was pleased to be back home where it was cooler, but during the night his condition deteriorated with a temperature of 38.5° .

 

At night it is more difficult to make decisions especially when one has no car available.

 

We started to work out the cause of his temperature. The analysis had shown a rise of white blood corpuscles, so the alternatives were two. Either he had a bronchitis, perhaps caused by the cold plaster room in the hospital, or else, since he urinated often , it could be a bladder infection. This last possibility could have been caused by the fact that my son suffered from Escheriichia.

 

Among the medicines I had with me I found one single pill of Zinnat. Reading the various indications it  seemed to me that this could be the right medicine, so I gave it to him..

 

The next morning I phoned the emergency doctor on duty, but since it was a Sunday they told me to  phone 180 and after three hours the doctor finally arrived. In the meantime the temperature had dropped to normal, so after his visit the doctor confirmed the Zinnat for a further five days. The mucus became less but at the same time, Every day, Sandro became  more and more nervous and bad tempered. We could not return to Rome as we still had no car, but it would not be a good idea to return to the heat there, these days.

 

 Somehow we had to organise things, so contacted certain social assistants, to whom I explained that Sandro , to me seemed rather bored , being very alone, since although the village was full of august holiday makers, nobody in particular came to visit Sandro to keep him company. Also the few boys he knew, when they saw him up in the garden , they saluted him affectionately, even hugging him with a “Hello Lallo!” but he couldn’t exchange the salute easily because of the tracheotomy. So by the time he could say !Hello!” they had already gone way..

 

In the evenings, however there was some amusement. One could go to various places to eat a pizza and now and again to visit another village nearby for their celebrations in their square. Very few things, it’s true but always amusing and cheerful when in company .But the sad thing was that we parents of Sandro felt left out. More than once we noted that when our neighbours left their house they closed the door very quietly so that maybe we would not hear them and they would not  feel forced to invite us to be with them. In fact we got to know only after a few days and through some children that chatted more openly and ingenuously that they had all got together somewhere or other.

 

Thinking carefully it was better to stay alone in the peace of our little garden and enjoy the wonderful fresh air. Those people had never thought that if only we had been invited to stay with them for a few hours we could not have accepted because going to them would have been too onerous for us. and for Sandrino, and not something pleasant but simply awkward.

 

We asked help from various volunteers if they could spend a little time with Sandro. People from the red cross in Bagni di Lucca at once sent me two or three boys for a few hours daily, and I must say that in the beginning Sandro would not accept them, but after a time he could hardly wait for his new friends to arrive. In fact it seemed that in the small communities the social communications functioned better.

 

About August 16 I noticed that on my son’s left arm there was a red spot, and after only two or three days it’s centre was surrounded by white, possibly indicating dry skin. These spots arrived on his whole arm, maybe due to the great heat these days. In fact it was a return of the Ptiricosi, but thanks to the fact that the spots were very limited I was able to use the cortisone cream , Fluobasol at once in small quantities without fear of causing a change in his blood pressure, and so after only a three day treatment the spots vanished completely and the spot most evident had become much smaller.

 

 About August 20th we returned to Rome because Sandro’s paternal grandmother, already 84 was alone in the city. Our only friends, Luciana and Mario offered to take us by car since we were still without one. We had an appointment at the Gemelli clinic for August 25 to remove the plaster, but that was an illusion because the old plaster was substituted by a new one to remain on for another thirty days.

 

 Apart from this there was another problem. The boys who had come to help me at home were exchanged for others by the ‘Co-operative, and were now fewer, and also the ones that Sandro had got to know and like were taken away so I had to reorganise the new work times and mostly to tell  the new ones what to do sine they had no training or ability to look after a person like  Alessandro..

 

 

 

Interdiction

 

 

 

1990    Aged 22 – After many years we finally decided to ask for an interdiction for Sandro to be able to draw a pension directly from a bank. So we went to a lawyer, Trivelli, with an office in the Via Roma.

 

It required an advance deposit of 550,ooolire, which with a bit of sacrifice we deposited  quickly along with a series of documents  promptly sent to them.

 

Every month we asked them for information on how the case was going and so a year passed by. Since Sandro at the time was quite ill, for several months, busy with other worries, we did not disturb our lawyer, who in his turn ignored the telephone. When we managed to contact him he always replied in an unpleasant manner. To remind him better of the case my husband and I  went to his office, always taking Alessandro with us. You can imagine what a sacrifice it was for us! Twice an appointment was made for us to appear in court, but our hearing never happened. There was a continual change to another date. All this went on for a good three years, after which we thought we could forget  it. Apart from all this, the lawyer whom I also did not trust through continually phoning him, assured us that it would be his duty to phone us as soon as something new came up. We had no means of taking legal action against him in his confrontations and attitude held, and we didn’t even have the legal receipt for the deposit made over to him. We were ingenuous enough, had never had need of a lawyer before now and thought they all would be honest.

 

It was July 1998 and we were still waiting for his telephone call.

 

We were advised to try a new office, this time with serious people. We felt the difference at once, compared with the previous one. After a few months we had a court hearing fixed where many of our family would be taking part, some also from Pisa, and for Sandro this day was like a party seeing that all his cousins and uncles were there. Of course all the late comers, out of breath were there too. Naturally Sandro’s presence was needed and this led to a series of tricks which by now you know.

 

We waited outside the courtroom for about half an hour after which the lawyer arrived whom they told our hearing was sent back 20 days. The second hearing went well, also if, to tell the truth, it was what followed that was amusing enough.

 

The public prosecutor, in fact, doing his best to meet our needs and avoid long waits thought of hearing us in the corridor of the court amid a crowd of people awaiting their turn and coming and going and the speed of the procedure gave no respect for privacy. The findings would be made public on the 19/12/99, and after about another two months we would be able to have the provision for the guardianship of an adult

 

 This took much longer.

 

 Alessandro never managed to have the interdiction.

 

 

 

                                                Insurance refund

 

 

 

During the legal case I have just described there was also a case for damages being discussed for the road accident suffered by Sandro and me so we thought of asking some advice from this same lawyer. The case in question was cleared up relatively quickly.

 

I was advised that the cheques for the damages could both be made out to me otherwise there would be trouble getting Sandro’s cheque cashed, since I did not yet have the guardianship of my adult son..

 

As expected the two cheques from the insurance arrived, one made out to me and the other to Sandro

 

Together the cheques came to 29.000,000lire I remember At the agency of my bank”La Comit” where I had for more than twenty years  a current account, and where I was well enough known, not only through the regular rise in my savings, but also through my family situation. Naturally I took Sandro with me and a social assistant. The cheque for me posed no problems and was credited at once to my account but that for Sandro  became a technical problem. The clerk at the counter thought it advisable that I speak with the agency director who at that moment was busy in his office laughing and joking with an attractive lady and her son of about twentyfive  with whom we heard him talk of really trivial things.

 

I waited about twenty minutes outside his door without him deigning to give me his attention, so I felt forced to ask him  to take into consideration  that I was here outside waiting for some time, and adding that outside the bank, my son, an invalid ,was forced to wait outside because of the few steps and the system of rotary doors made it extremely difficult for him to enter.

 

Visibly shocked, the director continued unperturbed to take his time with his client, always smiling and joking until finally he decided to honour me with his attention. I told him of all the disagreeable  situations that had been the cause of the two cheques. I explained that my son  had not yet received the court interdiction and had no personal bank account, but he must realise that the boy was waiting outside the bank with a social assistant so that he could put a + in the presence of two witnesses known to him. In fact they were asking to treat my son as an illiterate, laying down for him the same rules as for those who could not read nor write, but that was flatly wrong. The director without even raising his head to look at me contacted the legal department which in turn confirmed that the cheque could not be accepted from the moment that my son, as an adult would need the presence of a guardian.

 

The story is always the same. The word disabled makes one think at once of a stupid person. One never stops to think that among the disabled one could find someone more intelligent than many ‘Normal’ people.

 

The bank clerk I had previously spoken to advised me to go to the head office of the bank in Rome and gave me the name of a person who would certainly find an alternative solution.

 

It was extremely hot so we took a tqxi to reach the head office of the Comit bank in the Via del Corso And arriving there did not lack an argument with the taxi driver who wanted me to pay more than the meter showed. At our complaint he accused us of not realising his problems as he had the extra inconvenience of my son’s wheel chair in his taxi.

 

Also the head office of the Comit bank was not easily reached by handicapped people. They would find themselves in front of a door and steps, but unlike the bank branch I belonged to, the ushers of the bank came at once to give assistance.

 

We asked if we could speak to the person  I had been told about, but immediately the same usher made it clear to me that it would be very difficult for him to receive me in the morning if I didn’t have an appointment. .I asked him if someone would be kind enough to explain the problems to him which made it necessary for me to talk with him, but as soon as they heard it was about an invalid they shied off a likely nuisance and directed me to another official. I repeated the delicacy of my problem and my doubts of help from the official I had been advised to see.

 

The official pointed out to me there were other people waiting in front of his desk, so we waited nearby in clear view  for almost an hour, .then he rose, passed us within a twenty centimetre distance, without any sign to us and returned a good half hour later

 

Finally he asked us to sit down ,constantly avoiding our eyes. He heard the problem and understood that the cheque was made out to my son. Without even asking if the invalid was capable of stating his intentions and wishes and placing his signature, or was illiterate, they dismissed us saying the problem would have to be resolved by the insurance company that had issued the cheque.

 

Passing in front of the ushers I let them know that I was not mistaken in my opinion of the inadequacy and incompetence of the people to whom I had been referred..

 

And they, in great haste, helped me to push my son’s wheelchair down the steps.. I was the first to leave. Better perhaps if everyone did.

 

I went home tired and demoralised.

 

In the afternoon I contacted my lawyer to tell him the story. He gave me an appointment for the next morning, exactly opposite the bank that had issued the cheque.

 

Also there nothing was resolved. They explained they were not able to apply the rules for the illiterate because they had already classified my son as ‘incapable of intending or wishing’. They let me talk with the director. After waiting more than an hour the lawyer was forced to go because of another urgent appointment, but simply to resolve the problem he offered to open a new account at the same bank but a branch nearer home..

 

He pointed out the bank and gratefully took his leave, but as speedily as possible.

 

At the bank entrance in the Piazza dei navigatori there were at least ten to twelve taxis waiting. I approached them to ask which would be the first to leave but at once the reply came that the only taxi that would take my son would be an ambulance. Each taxi driver in turn refused to take him, offering various excuses, and each as in a comic scene tried to convince the first taxi driver to take me away..

 

I then very calmly(I managed to smile even while boiling inside) took out my cellular phone and tried to solve the problem by ringing 113(police)  giving the taxi number and accusing him of refusing a public service

 

The scene that followed was even more comic than the first. Each taxi driver tried to convince the first in the file to shove off, saying ”Take her away – take her away and get rid of this trouble!”  In the meantime others arrived at the window of the first taxi, surrounded me and told me to get in while others grabbed the wheelchair to put it in his taxi. We were treated as if we had the plague. The sooner we were away the better for everyone.

 

I tried to tell them that anyone, even the most normal and acceptable looking person could become ill once they climbed into a taxi but however, in a panic they didn’t listen, so Sandro was got into the taxi and they folded the wheel chair and ordered the driver “Go, go for heaven’s sake. Go, go Take it away!” 

 

During the ride the driver tried to excuse himself, and thus, for better or worse, we got home.

 

 

 

New Year 2000

Jan1st  2ooo

 

Cheers!  The new century begins.

Alessandro spent the night of the millennium in the company of his friends, part of a group of volunteers who now and again came to keep him company. The boys had insisted that they should take him with them to a place outside Rome(Castelli Romani) and had decided to stay there for a day and a night. This made Sandro really happy

We, on the other hand, as we nearly always did every year, organized a celebration at our house .In fact we had many friends and knew that they might invite themselves.

You have to know that when there were celebrations especially New Year’s Eve, our house was a meeting place for all who at the last moment didn’t know where to go, or where to take their old parents. It gave us great pleasure to know they could count on us.

All in all, the beginning of the new century seemed to be sufficiently good.

If you had thought that by now everything that could happen had already been experienced, that was not the case. However, by now, and taking Alessandro’s age into consideration and the type of life he’d had up to now, the future would be even harder.

 After a few days Alessandro began to breathe very badly (worse than usual) and I couldn’t work out why.I thought that having cleaned the house again, taking every precaution in case perhaps he could have breathed in too much dust, or was it in fact the course of the syndrome that was making him worse? There were so many questions that nobody could answer.

One day,  perhaps because of his bad breathing a piece of pizza went down the wrong way

He began to cough hard, turning red in the face, and now and again a tiny bit of pizza would come out of the cannula (breathing tube)  Then he began to cough like an attack of asthma, worse than ever before.

To manage to calm the asthma he was given a few drops of EN and put to bed. 

The next morning he was slightly better but his breathing was still strange.

It could not be pneumonia because only a few days previously, as a precaution against influenza, they had given him a series of injections of Rocefin, and besides bad smelling mucus was not coming from the cannula and that would have been a sign of pneumonia. I tried putting some physiological solution in the cannula but it did not help.

On the 4^th Jan. the situation worsened, because the mucus was so thick I couldn’t get it out of the cannula.I was not sure if I SHOULD Take him to the policlinic Gemelli, consulted my husband, and decided to do so, not to go to work but to take him to hospital. I should have left the house within a few minutes.First I waited for two friends, colleagues at work, who that morning would bring me some of their own production of Virgin Olive Oil.

They arrived downstairs and my husband went down to greet them, but a few minutes later they called me on the entrance phone to say that Ubaldo had suddenly fallen on the ground. At that moment I thought it couldn’t be anything serious because every now and again he fell without

Any reason and was told it was nothing serious. That time, however was not like the other times.

I couldn’t lift up my husband. My colleague at once called an ambulance and in the meantime tried to do some heart massage. I couldn’t do it  because he had a very rigid rib case and I was not

strong enough to move it. I remember that they were practically giving him a punch up. It came back a little but the heart beat was very slow. The ambulance came after about half an hour. I ran up and down between the flat entrance and the 5^th floor to get Sandro to breathe and down again to see how Ubaldo was, left with my two colleagues.

I needed an ambulance also for Sandro, but the one that came for Ubaldo could not take Sandro as well .Naturally it left at once, taking Ubaldo to San Giacomo hospital, while I called a taxi to take Sandro, not to the Gemelli but naturally to the San Giacomo.

On arriving at the first aid I had to wait outside a door until shortly a doctor came out to whom I explained my son’s problem. He said I would have to wait several minutes as they had a rather serious case in hand. I asked  if by chance the person they’d just told me about was called

Baldassarre Cerami, because if so, that was my husband.. He only confirmed that but said no

More.

I didn’t know how to divide myself. Certainly I had to stay with Alessandro, but equally my husband needed me. I went with Alessandro into the reanimation room , offered to help the doctor during the tracheal cleaning with physiological solution, oxygen and various suctions. In the meantime my

Husband was taken to the heart resuscitation and fought against death. It was necessary to apply

A pace maker to be out of danger. Also Alessandro was taken from reanimation although his trachea was not yet completely clear.

 

Spring 2000

Age  32

 

It is difficult living with a tracheostomised young man because the cannula tends to widen the breathing and when Sandro was rather nervous, which happened quite often, his breathing became irregular and drawn out.

When also, for various reasons ( a little humidity or accumulations at night) the mucus became thick. You felt a rising helplessness because it became almost impossible to aspirate him even with a tube.

You cannot understand how a parent feels. You breathe with him but after a time you are overcome by despair, and to me in particular, I was overcome by stress (arythmia), to the point of having to take sedatives.

 A valid help could be achieved by putting in the cannula a few c.c. of physiological solution along with a fial of flumicil, a little at a time.

When I tried this Sandro tried to cough in an attempt to get rid of something, but without success, becoming red all over, the veins in his face and neck swollen to the point they might burst any moment. You can’t understand what a torment it is to feel all this: you don’t know what to do and at the same time try not to cause any agitation; you have to pretend it’s nothing while trying at the same time to reassure him, making him believe all is going well and the discomfort will quickly pass away. 

Then I gave vent to my feelings  (without anyone hearing)  outside on the terrace, if we were in Rome , or in the garden, if we were in the country ,and let off a few swear words, picking on the Eternal Father and the Madonna, but it changed nothing.

 

Friday 8-9 April 2000

 

On 2 April I stopped  work and became pensioned., thus on the 5^th we decided despite a lot of sacrifice, to go into the country with Sandro in the hope that we could stay for a few days but it was only a vain hope, because Sandro’s blood pressure rose and fell suddenly and continually and his physical condition was not good, to the point of needing continual care and the presence of someone constantly to keep an eye on the cannula or to be able to change it, wash him and feed him according to his needs.

One evening Sandro ate in the kitchen on a lower floor of our house.

Suddenly after the meal, while we were finishing ours, his blood pressure fell suddenly and he asked to be taken to bed.

While my husband tried to take him in his arms to carry him upstairs, Sandro became irritable and violent. Ubaldo got angry with him, and Alessandro, even more spiteful, started to go alone to his bedroom, walking up the stairs with a remarkable show of strength.

I intervened, trying to calm him down, and letting him go up more calmly, but his breathing became longer and he became more and more black in the face. Arrived at the upper floor I tried to put him on his bed but he began to twist about and his breathing was more and more stressed and after two or three rattles, foam came from his mouth, he wet and messed his pants and was in fact unconscious.

I called Ubaldo to come at once and he said to give him heart massage, in the meantime looking for the hand breathing machine. 

But the bed was too soft for the heart massage to work, so we put him on the floor and changed the cannula to fix the one connected to the suction machine. In the meantime my husband continued with the massage, just as the air began to circulate, Sandro recovered suddenly, making a strange rattle, and opened his eyes. Brought back to life we called an ambulance,  continually reassuring him that all has happened for the best.

After about 20 mins. The red cross Volunteers arrived from Bagni di Lucca. They were not specially equipped but thanks to god, by now, Sandro had recovered.

After a short time another ambulance came with a lady doctor, Gradually, seeing, Sandro had by now improved, we thought he could perhaps remain at home but as the colour of his face was still dark it was decided better to take him to the Lucca hospital

It was an incredible ambulance trip. On these country hills the roads have continuous curves, while I strove to keep his oxygen mask in place, after a time I was in a worse state than he was.

We stayed at the Lucca hospital for three days.. Sandro was constantly monitored, and  it seemed to be going well, although for three days I could not rest at all. I was constantly beside my son, checking on the cannula to clean it, feed him  and look after him in every way. When he was discharged both the doctors and the nurses congratulated me on all I had done for my son. What a slight consolation!

13 / 8 / 2000

 

I found myself thinking that I should write down everything that I have experienced and still live with but I have little time for that and honestly little desire at the moment. It is not easy to describe a nightmare because your brain just wants to block it from your memory.

Yes, I’m talking of a nightmare that lasted for months and months  when the stomach was gripped and the legs shook. Every day you think it will be the worst of all the others you’ve seen and tomorrow you can only hope it can be better, while instead , every day is the same as before, if not worse. Finally the minutes are seen with a terrible fear, anxiety and suffering that  continually increases and never goes away.

We live all day in one room with an oxygen cylinder beside us – saturation meter, breathing machines and a hundred more weird contraptions you wouldn’t even find in a hospital

Sandro searched desperately for company, anxiously waiting for anybody, especially his cousins but it seemed that they had all vanished.

People in general don’t like to see those that suffer. They only think of amusing themselves, laughing and joking because everyone lives with their own suffering, thinking theirs id worse than the others, and not thinking that others suffer more than they do, and wait hours and hours for a friend to come and give them a little company to break the daily monotony.

Believe me it’s really sad even if you manage to understand perfectly those who refuse thesse situations. I also don’t want to escape from feeling his suffering.

One day though, if I manage to, I will describe  all that has happened in these months in hospitals. I want to do it for all the parents, who like as, have gone through all these periods.

 

10   /   11 / 2000

                                                                                              

Perhaps the time has come to tell you everything that happened in the month of August because I think it might be difficult  if I want to remember it.

 

As I said, Alessandro became always more nervous and excitable. We have stopped giving him Mogadon and the drops of EN because in the spring he had an ischemic attack which made the movement of his hands particularly difficult so he had great trouble eating and drinking. Already hr walked very little, and with that extra problem the situation became worse.

When he ate something, frequently a bit of food came out through the cannula and always caused various pains. When we put him to bed he held out his arms to let us know we must pull him up. By now he was talking less and less. His breathing was increasingly laboured.I tried to follow his rhythm but did not manage to keep it up because the effort was too tiring. With all this came the need to change the return cannula  continually.

I tried not to aspirate him frequently because I had been warned it was dangerous and risked  either getting a lung infection or having a cardiac arrest.

He complained continually. .Suddenly he needed to empty his bowels or bladder, then on one occasion he turned black in the face and it was necessary to attach him at once to the oxygen flask

He was always becoming more impatient and edgy and could’t find a comfortable position even for a few minutes

It was a terrible time and always staying beside him meant a real sacrifice  also for us as  his parents.

One morning he told me he had a pain  in his left groin so we phoned the doctor on duty who advised us to go to the first aid in Lucca hospital

 After a few hours and a number of check-ups they dismissed us saying  to give him pain relievers (suppositories) .In the beginning they seemed to have a positive effect, but the next morning Sandro looked as if drugged. My husband thought his last hour had come.

In the afternoon the situation became worse, his breathing more laboured and his colour increasingly black.

The situation made us both extremely nervous, especially my husband, who perhaps not being able to understand quite how ill his son was, smashed up various things at hand, such as tables and chairs. Now I was beyond scaring. I was too busy acting the part with Sandro to distract him that everything would go well.

We returned to the first aid at Bagni di Lucca and from there by ambulance for the umpteenth time to Lucca hospital. We followed by car but both of us had the strong feeling we’d not see him alive again, because when we left him at Bagni di Lucca, Sandro was really bad, howling with pain, breathing badly and was a bluish colour.

But Sandro was a really tough boy with a great desire to live..

In hospital they didn’t know where to begin because they knew nothing about the syndrome that Sandro had.

They consulted with various specialists from surgery to urology. The urologists gave a hypothesis of a strangulated hernia and asked for a consultation with a surgeon who thought differently and not knowing what to think asked for a further consultation with the urologist.

 It was a case of “scrape the barrel”

After two or three hours Sandro’s condition had worsened, the pain increased, his colour blacker, and as his breathing got more difficult he was forced to put out his whole tongue which by now also seemed more swollen. Finally they decided to admit him to hospital.I remember that a doctor  in the first aid came up to me and asked me with a naivety that touched me because he wanted to use words to console me but didn’t know what to say “madam, what does the boy have?” And I replied simply “Truly I had hoped to learn hat from you seeing you are the first aid.”

They decided to take him to surgery but when they got there the doctors in that department literally put their hands in their hair. They would have liked to speak to  a doctor in Rome who had some knowledge of the boy’s pathology. So I tried to contact DR.Z. but he had left on holiday and was already over the border and it was difficult to keep contact with him on a cellular phone.So without intending to  I also upset Dr.Z. for which I was very sorry because I knew that after so many years the doctors also get fond of their little patients. I also tried to phone the lady biologist Dr.R. who apart from looking after  Alessandro for years as a doctor had become our dear friend. She was also away on holiday like Dr.Z. SO I ruined her holiday also.But fortunately I managed to explain to the various professors gathered round Sandro’s bed what the Syndrome of Costello consisted of. But added that in Alessandro’s case it would be trial  or error since at that time there was no exact scheme of what to do seeing it concerned a boy older than all the others affected by this syndrome.

At this point seeing it was a quite interesting case they formed a continual coming and going of professors. .Then Sandro got a temperature.

They didn’t know what to do and in the reanimation room there wasn’t even a vacant bed.

In the end they gave him a fial of cortisone to ease his breathing and another of Depachin  because they believed he was having an attack of epilepsy, one of Buscopan to relieve the pain and another of Rocefin  to prevent eventual  infection. A lady doctor of the reanimation aspired the mucus because Sandro was full of it. I did not do it for reasons I gave earlier (Sandro had already had a cardiac arrest in 1991)

Sandro got better at once and was transferred to the medical ward and next morning we saw him for the first time in many years sleeping serenely with his mouth wide open, breathing peacefully. My husband and I couldn’t believe our eyes and ears.

The fever also went

We were worn out. We had watched over Alessandro all night taking turn on an arm chair or with feet up on his bed  in a room with seven other patients, all old and of course all gravely ill.

In our life one is used to discomfort .It is part of one’s way of life .For us it was always wonderful to get up , even in a hospital room in the morning, we were happy with the single certainty of going to

The bar and getting a cappuccino or a hot coffee.

This is to say that the night is over at last .Dawn has arrived and the worst was certainly over.

We were happy just with that.

It is really true that happiness is relative, and at that moment it was the aroma and the taste of a good coffee.

thirty three years

 

I realise that reading all these things, in the end it becomes repetitive. For years and years since Sandro was only four, I was always afraid of my son dying, and the fear got worse as Sandro grew, because his condition worsened more and more, and now the years are thirty -two, the happenings always  equally unpleasant and always more serious always followed each other with greater frequency.

It is quite useless to describe to you the races to hospital by ambulance while I followed behind with all the equipment, complete with oxygen cylinder, because I knew by now that even if you arrive in hospital the wait in first aid would be long and they needed many hours before you could be hospitalised, found a bed.. it was difficult to have portable aspirators and also portable oxygen cylinders, but the most useful thing was to have a meter that controlled the flow of oxygen absorbed in the blood  and the heart rate.

Most useful also ,the ‘ambu’, a hand respirator which I inserted into the return tube (cannula) to revive him from a cardiac arrest.

Even if one is in a hospital corridor, a doctor or nurse is not always with you and a life can be at stake in a few minutes. In a large hospital, when you call for a doctor urgently, wherever you happen to be, it can take from 15 to 20 minutes for them to arrive. So experience has taught me to act alone in such a situation, so I always carry everything that might be needed.

Following many admittances to hospital through bad breathing they  frequently do two bronchoscopies.

When the house doctor sees that air is not entering the lungs the patient is taken to hospital, and it happens that many of the breathing problems are due to air in the abdomen, which obstructing the lungs, prevents them from breathing.

 Now I have understood the great pain he had during the summer.

Another thing that prevented good breathing was water in the tissues and therefore also in the lungs.One can alleviate this by giving a little Lasix

The heart is always more bloodless. At every control the cardiologist whom we had known for years, asked himself how was it possible that this boy  could still be alive.

By now those who suffer from broxsismo have a really tired and stressed body, and during the night grind their teeth noisily.

My husband and I do not leave Sandro alone any more with the assistants. Apart from a few rare outings in his wheelchair always followed by oxygen and aspiration afterwards.

We were both very tired and stressed and hoped that at least one of the social assistants from the U:S.L:, knowing the case, would come to help us. It would be enough to let us sleep a few hours in the knowledge that Sandro was in good hands.

This however did not happen. On the contrary, once we were phoned by the USL social assistant.

I always, naturally hopeful, remember a day, talking with her, who should attend to the good care of my son, and us parents. I told how my days were always passing without sleep apart from the inexpert and incapable ‘helpers’ sent to us for two to three hours per week to allow me to close my eyes for a few hours by day. At night it was a nightmare. between aspirating, measuring blood pressure, watching the machinery; running to deal with the first aid light that came on at the first signs of lack of oxygen in the blood, try to stop Alessandro from grinding his teeth and a hundred other frantic happenings. You’d like to know what help the social assistant gave me?

She fussed over the point that I should stop helping, to give the responsibility to the assistants – what anger and complaints! And to say all this to me I was made to go in the end to her office without her thinking that for me every second was precious

One knew that for serious cases a law had been passed which instead of assigning assistants, money help was given to help adult invalids, this way integrating the contributions to allow the choice directly of someone who could help. I went to enquire, since Alessandro was sufficiently ill to suspend the assistants. We had not yet acquired ‘interdiction’, so logically he was capable of ‘wanting and intending’, and in any case was adult so should have been able to get this grant by a good margin. I made many trips as usual  asking for written confirmation of this possibility.  Then  after some time they told me that Alessandro had been refused assistance, and I asked why and was told that Alessandro was lucky, he had us. Others without parents were worse off, or at least could not live with them. But still I asked myself, why didn’t you say all this before, so I didn’t waste time. Also I found everything terribly exhausting. (I slept in the end for a few moments, eyes closed, as I went down the escalator in the Rome underground railway.

I went back, hard headed as I am, to the social assistant, this time not sweet but extremely angry. It is not in my character to cause scenes. They thought in fact that I was out of my mind and calmed me down, re-offering me assistance for several afternoon hours, but on condition that as well as the assistant either I or my husband would always be present. Who knows what, up to this day, according to them, we had been doing, my husband and I – exactly that, and without me saying so. We could not leave Alessio in the care of some of them .There were few people truly capable of giving assistance.

Alessandro with his weak constitution and with so any pains all over him, became more and more intractable. He bit me if I didn’t look at him or looked at me with closed eyes When I lay in bed with him in the evening he hit me on my breast to wake me up if he thought I was sleeping. He hardly spoke but signed that he wanted the blind pulled up the point he could see the dawn light. If the bed had a few creases on the corners he leaned out from sitting to smooth it out himself. If he saw a glass o water he called to have it taken to the kitchen He wanted everything to be in perfect order. We tried in every way to get him to eat. I made him thick soup, tasty with many things .We gave him those horrible diet integrators to drink to give him the substances which he never seemed to get enough of. But he wasn’t always hungry. We had to convince him to eat. If he didn’t eat we would be forced to put a catheter in his stomach. He listened more to his father because he was better at convincing him. At that point I wasn’t capable any more of managing him, other than to wash him. Therefore I prepared the food and washed him. My husband fed him and lifted him from bed to wheelchair, or to various arm chairs, in the few days we came home from the various stays in hospitals.

His father, so as to be more present, started to build a large sailing ship out of wood, on his desk in the bedroom so he was in company and was able to stay in bed more willingly. However the completely sleepless nights, by now, after years left their mark on me because I was better able to stay with my eyes open.

By now, after some years, since when I saw Alessandro’s heart in the cardiac ultrasound monitor showing the various signs of ischemia, and saw him always getting worse, I lived with a terrible fear and when I could I left him  if only for a few moments.

If we were in hospital I didn’t ant to go home again, not even to change or rest myself. I preferred to keep him in sight.

If we were at home it was enough that I leave him just to get a glass of water. To go to the kitchen from Sandro’s bedroom was only two meters and when I reached his room my knees trembled and my whole stomach twisted up with fear (like watching a horror film) to let you understand. The fear of seeing him dead again and having to reanimate him again; to hear again the grating sound of his returning breathing: the responsibility of those who would have to do it. Would it be right if it could have returned once more and if it had not – what had I done? All this every time I left him just for a few seconds.

In  terror films after a few hours of fear everything returns to normal. For me, however, it was a life of continual terror.

I returned to his bedroom, spoke to Sandro always calmly and with a smile stamped on my face so as not to worry him, because he remained calm, only that he knew that my smile was not genuine and he said “Mamma are you getting my grave ready?” Scandalised, I replied “ Sandri – but are you mad. Never say such things even as a joke, then when mamma is old – who will help her?”  he smiled and pointed to himself. This way he protected himself from my reactions.

Not so bad though these boys are considered by medical standards to be mentally retarded.

He had a great will to live: knocked down all the medicine I gave him, even huge capsules. I don’t know how he managed to swallow them. He wanted to be well. As soon as he felt stronger he wanted to take a walk alone, for a little tour inside the house.

During the final months of Alessandro’s life we did all the hospital controls for the various infections he caught, and for which he had to take antibiotics, which in turn caused fungus that had to be cured, making a vicious circle which  was not easy to escape.

From one blood culture they found an infection with maltophilia. I looked it up on internet and passed it round the doctors. It was an infection that affects subjects suffering from ’cystic fibrosis’ or being treated by blood dialysis. The bacillus fixes itself on the chalk in the water in the instruments used for breathing or aspiration.  It only happens when the organism of these people is very weak, along with other infective bacilli, therefore it is necessary to do a bronchoscopy  that will show the secondary infection as well. .Only after the required treatment I took Sandro home

However I saw a change in the colour of the mucus that came from his lungs..(A darker yellow and even more bad smelling)  This seemed rather strange to me since Alessandro had taken specific antibiotics. It must be a third infection, something I had read about on internet but which the hospital had not discovered.

As soon as he came home I took the opportunity of getting a sterile sample of mucus and I took it to a private laboratory for analysis near home, asking the doctors to call me if the third infection was found in the mucus, which I had read about. This could be the reason my son was not better after months of treatment.

I also added the third specific antibiotic, but already his physique was too weakened with all these medicines. Our family doctor told us just to keep hoping….. I was more lifted up. At least he could breathe a little better without that lung infection.

By now many friends had vanished. They could not bear to see  Alessandro suffer as he did. They preferred to phone to hear how he was. So it was the family, that despite everything he looked forward to with joy, and with them he could have passed the time more lightly 

As the days passed so the telephone calls became less and less, but now when I think about it I understand why. They were afraid of hearing the worst.

The day of his 33^rd birthday he managed to sit at the table with his cousins Simone and Raffaella and joke a little  but by the afternoon we were forced to  make the usual race to the hospital. Also his previous birthday he had passed in hospital. They were far away the birthdays with many friends and wonderful parties, but we were equally full of hope. Sandro  wished to live and  his 34thbirthday  would without doubt have been better..

The last days he did nothing but get himself pulled up so he could sit.. As soon as he sat he almost fainted and lay down again when he couldn’t take it any more .With his shortness of breath he raised his shoulders and said ’Up’ So it went on all day.. Through the new antibiotic against the third infection, he seemed better. The colour of the mucus changed and Sandro  breathed more easily.

Also despite his grave condition, our hope was, as always, to get him back in his wheelchair and take him with us walking in Rome.. At the beginning of the year I finally became pensioned but it was no longer possible for me to take him out because his illness had become worse.

For the last four years, every June I had gone for twelve days thermal treatment by the sea, nearly always to Ischia, to relieve my aching bones. .In fact for me these were the days  when at last I could sleep.

I slept while they covered me with mud. I slept by day on the beach and finally all night it helped me more than anything else, to begin again every year. I was though constantly tied to the immense problems at home by my cellular phone. Every now and again my husband and Sandro came to find me but they did not stay. The coast was too hot for them. They preferred to remain at home with all their comforts.

Also this year the date came for my departure. Like every year I organised myself so that for our cost we took on people who could help my husband while I was away in Ischia. In fact he would have preferred to remain alone with Sandro. He always said “I don’t want to be helped by anyone. Sandro and I are better alone.”   I know my husband, however. I know that when he sleeps it is profoundly. So I was not at ease, and if Sandro needed something or asked for help? He would not have heard. I did not understand that for my husband  these days when I was not there were for my husband his days when at last he could enjoy his son and have his attention all for himself Allessandro looked only and always for his mamma .When I think about it I left little space for his father and these twelve days  represented the only days in the year for my husband and son to be companions with each other at last.

A few hours before I left at about 1 a.m. my husband and I were both awake as usual. Ubaldo came to me and said “Grazia, I think that Sandro has gone now.” I went the two meters that separate the living room from Sandro’s bedroom with the usual terror. It was true. Sandro reacted to nothing. The oxygen blood saturation meter showed an abnormal reading. The oxygen at it’s maximum did not do its work  It was different to the usual crises Alessandro did not become cyanotic as he did during his usual heart arrests. He looked fine with a rosy colour and his limbs were relaxed It seemed that at last he could sleep serenely.

 The first thing my husband said was “Now leave him. Don’t wake him up. Let him sleep, we mustn’t disturb him more.”

I stayed a few seconds beside them on the bed thinking what to do.

To call an ambulance? No. By now when Sandro heard its noise he said immediately “It’s not really for me Mamma?” Nor to go to hospital. Another visit to the first aid and all the business to do – what? By now we had all the necessary apparatus. We knew more of what was the best thing to do than the various doctors on duty in the hospitals.

 I  had to do something however. I couldn’t stand rooted there in tears and wait for death to take him away for good. Without thinking I got up and took the Nifedicor to lower the blood pressure and let a few drops fall under Sandro’s tongue where it is absorbed immediately  and remained a few seconds waiting and letting me relax and enjoy the unknown silence. Yes, it is strange, but it gave me such peace not to hear that frightening sound of his breathing in the cannula any more. His father and I remained seated  on his bed in silence, strangely tranquil, to wait. I held his hand as always. Ten minutes must have passed and Alessandro seemed to be waking up, gradually began to move, then began that noisy breathing, so familiar to us. He was with us again.

The time for me to leave had come and my husband said to me  “Go. I’ll look after him.”

Now, you tell me if I could go. Already every year I left, worried. Think how it was this time… I managed to convince my husband that Alessandro would be better off in hospital where they could give other advice  Finally accepted, naturally I put off the departure for Ischia; remained two days and nights together with him, after which I did not send him to hospital. My husband begged me to go away as by now Sandro was better, and he assured me he could look after things without me.

I left with the car and with the cellular phone always on with the ‘viva voce’(loud speaker) They heard me every ten minutes . During the complete journey I asked a thousand questions “Have you given him a capsule, have you given the drops – the suppository?”

I arrived finally at Ischia, I don’t know how, but I was tired, stressed and trembling. I thought I’d not take my luggage from the car, simply thinking that the situation could change from one moment to the next. I got my room, ate quickly and went to sleep, always connected to Rome. I fell on to the bed without even undressing. 

The next day as soon as I was awake I phoned Ubaldo who assured me that everything seemed to be going better Alessandro had even asked to eat. Finally calm I took the bags from the car and also admired the view. .It was a beautiful hotel with a lovely garden full of flowers of all colours  and the delightful perfume of jasmine and petunia. The sea was blue and calm Everything seemed stupendous. The day was sunny and the heat was perfect. A sign of the beginning of a perfect holiday.

There wasn’t time to taste all this. I was still deep in thought when the telephone brought me roughly back to reality. It was my husband, “Grazia, this time Alessandro has gone and for always.”

How could it be true? He was dead many times and then he recovered. Was it possible this could be the last time, really? My feelings became strange and contrasting: a pain that hit the heart  and gripped it like a bite and at the same time a relaxation in thought of a mind that had already realised that now one does not have to think of anything any more.

I wanted to leave at once for Rome, but my husband did not want that. He told me that  many things now were useless; that he was capable and wanted to do all the necessary things for Sandro alone. Many people now were with him; the doctor in charge, family and friends who would help him to dress Sandro and do all the dreadful practical things needed for the funeral.

In my heart I really hoped that my husband did not really need me there. I did not want to see my son dead. I wanted to remember him alive. I had seen many people I had loved die in my life and the memory each time  which stayed fixed in my mind was the last – that on the death bed. I didn’t want that also to happen with my son.  How often I had been alone before Where were the family and friends in the worst moments? I was not there, with my terror, always alone to solve the problems these last days.?

In Ischia I was far from home , far from everything, also and above all, from that new life I could have visualised but not experienced. I was with strangers, never known of before now, apart from a few colleagues from work who like me were visiting these places, but knew nothing about my life, my dramas or my son..

I did not cry, not even one tear, I could not believe it Was it possible? Had  Sandro really finished suffering? And now… what had he done? My thoughts immediately ran back all the 33 years of his life. I saw all the scenes; how many analyses, tests, how many samples taken without batting an eyelid – to help diagnose his illness. And I? have I done well or badly in deciding things? Have I always made the right decisions? I analysed all the smallest details, thinking about the things I should have done and did not do, and those I had done and should not have done. And I thought about Alessandro’s last crisis. Had I done right in giving him oxygen when he himself did not want it any more? And when I insisted on giving him food, or even more cowardly, left his father to give him food which he swallowed against his will, but knew to be a hope of life. All these hopes and with those infernal machines. How he must have suffered! 

I remember the confidences exchanged with the other mothers I only met in the hospitals  and who had sons with similar problems to those of my Alessandro and how often we exchanged confidences of our suffering on seeing them suffer and we asked ourselves “But when will they die?” Would it not be better that God stopped their suffering ?  And we mothers What would we have done afterwards without our loved ones? We don’t know the answers to those questions, because when a son dies the mothers don’t meet each other any more.

 What have you done now? I was too old for a new life I was tired by new things. I was in pension so my work as computer programmer could no longer help me how does one start to live again?

The only feeling which slowly, slowly gave me peace was that Alessandro at last slept as I had seen him do two or three days ago. Alessandro did not suffer any more. I would not hear him say “haio, hai” any more

I told a few colleagues what had just happened but they seemed incredulous. Inside I was so calm and tranquil How was it possible that my son could be dead! They were all  very polite and kind to me, but nobody asked me about him, and the fact that I didn’t have to talk I found good.

The next day I travelled back to Rome for the funeral. I remember I didn’t want to go to my house, to Sandro. I went to my sister’s house where my nephews were Now Alessandro did not need me any more, and my husband was happy to have his son to himself at last. I did not know if going to my son’s funeral would be the right thing; to do what? I could not be useful at a funeral. There, there would be nothing for me to do. Perhaps I would have done better to remain in Ischia!

There was a crowd at Sandro’s funeral despite it being one of the feast days in Rome, and so many people had left Rome to benefit from the extra day’s holiday I took part in the funeral without being a part of it, almost as if the body did not belong to me. On the other hand I tried to console the people who were crying, saying “Now, he’s all right. Finally he is asleep  Don’t worry”

The priest said beautiful things about Alessandro The phrase which I remember and which impressed me most was “TODAY A GIANT HAS DIED!”

It was true. Sandro was really a great person who had put up with so much  and always with a smile, also during his last stay in hospital he had let them take off a centimetre of his skin, while awake, for biological research. What else could he have done?

The worst moment was the burial of Alessandro His coffin was there in a line with other coffins waiting to be lowered into the grave and covered for ever. When all was completed a man approached me, put a small white card in my hand, “here it is, madam. This is your son.” But how? After all these years, the sacrifices I had made and the enormous sufferings of my son, he was turned into a number written on a piece of white card? Could it all be there’

Sandro was nothing more than a piece of white card.

My husband knew that all my luggage was still in Ischia and sooner or later he would have to go to get it. The hotel room was booked for another week. He told me not to get out at the house but return to Ischia. I asked my husband to come with me at once. What was there to do in Rome now? I did not want to go into the house and see those awful machines and that bit of corridor…Sandro in his room… he wasn’t there any more. My husband begged me to return to Ischia and he would come to me later on. But from the time he had all my family around he felt  more at home and calm in his own home. He never  had really enjoyed hotels.

I said goodbye to everyone, family and friends, and caught the first train. I left the car with my husband. Now he could go away if he wanted to.

I’m writing all this now several years after Alessandro’s death. I suffer with it greatly but I feel the need to do it for the sake of all the mothers, who, like me now are asking themselves how they will feel afterwards. I am faced with other mothers who have lost their sons through the same illness, and on the whole are facing the same feelings.

 

Afterwards

 

Rome – Naples. The journey was not long and without luggage one travelled better. I caught the hydrofoil  and arrived in good time to have a shower and eat something.

The people at my table treated me gently, cuddled me and tried to keep my mind occupied, so I didn’t have to think.

One lady who had finished her turn at the thermal cure greeted me saying, “Good wishes madam for your ‘new life’.” It was true .Up to now I hadn’t thought about it. I was afraid of what would have happened to me afterwards. It was in fact that. It was a new life. I clung to those good wishes. It is true that at certain moments one finds the right people.

The next morning some of them invited me to go with them on a trip along the Amalfi coast. By now I  no longer had anything I had to do or think about. In the morning once I had heard how it was with my husband in Rome I was able to think only of myself, and accepted it.. After years I can still say that this was the most beautiful week in my life.

In the eyes of many people what I have just said may appear to be terrible, but it is not so. On the other hand feelings experienced  are not the same for everyone and many are ashamed to admit the truth. During the first days one cannot take in the death of a very much loved one. There has to be a sort of defence for your mind not to become crazy.

It was my first day of freedom after years of forced imprisonment. It was as if you were put out of prison. I was wakened from a nightmare. My legs didn’t tremble any more and I didn’t have that cramp round my heart or twisting of the stomach, but the thing that more than anything else that truly made me happy was that at last Alessandro at last managed to sleep. How many times a day he said to me “I’m tired.” But after a few minutes he wakened, either due to apnea or because of pain ,and immediately after repeated ”Mamma, I want to sleep but I never manage to.” It was an all night wait for the dawn because in the morning hours he managed to sleep better. Now finally he slept .I no longer keep the telephone beside me; I don’t have to think about drops, suppositories, pills,  blood pressures. These thoughts made me feel euphoric.

The splendid morning filled with sun, with a blue sea.; the cappuccino coffee with an excellent hot flaky pastry, together with sympathetic people full of understanding that did not make me remember my son will represent for me a  good welcome to my ‘new life’. It was by now many years that I had visited Ischia, but I never realised how beautiful it was, Also the Amalfi coast with those panoramas, perfumes, little villages, the sails on the sea. My friends chose for me the best places to eat. We had dinner at Positano in one of the better restaurants Near Amalfi they took me to taste  the ‘lemon delight’ They fussed over me and I let myself be fussed over. I needed that at those moments. This went on for the whole week, choosing me beautiful places in the evenings with romantic music, special restaurants where they cooked good fish, everything combined with splendid views over the sea and a marvellous moon. For years I had not felt so happy To think hard, I had not felt like this  since the day that Alessandro was born.

Then the week came to an end and I prepared to return to reality. I went home to where all my memories waited for me and where Alessandro had left an overwhelming emptiness. By now ir was late July. The city was hot so my husband and I decided to go to our little house in Tuscany

Now it is already three years that Alessandro is no longer with us, but we manage to talk about him peacefully. We miss him greatly. We don’t do all the things we did when he was here. Now nothing seems to matter much. It all seems stupid and insignificant. 

After three or four months I opened the internet and reconnected with the site where the mothers of the children affected by the syndrome of Costello can contact each other. I was amazed. I felt really bad listening once more to all the things that happen to all those children more or less ill in the same way like a print repeated each time. Is it possible that this could also have happened to me?

 Alessandro has experienced quite a few years and I do not want all these experiences and sacrifices of Alessandro to be lost. The only thing I can do is to tell my experiences as best I can.

The more the years pass the more empty my husband’s and my life becomes, full of problems that all seem to come out together. The only thing that remains from the past is the anger. It assaults you as soon as these children are born. It follows you all your life and even when they are no more you keep asking yourself why, why?

Medical science is going ahead and certainly it will give an answer, at least I hope so. I am neither rich nor famous. I don’t know  how to do what has to be done to investigate this rare illness in all its aspects, profoundly. I shall always try to do my best to give my contribution, putting my experience at the service of those who could need help, also  to keep their spirits high

I tell you only not to put out the lights of hope.

 We try to go ahead and to fill our days  with those things that will never equal the company and smile of Alessandro. I have learned from memory many songs and bought an electric piano complete with loud speakers. Now I sing for our many friends at parties in restaurants or in private houses. In summer on the mountain I organise evenings in the village square, and always to end the evening, sing the lullaby Alessandro liked best, “A caress within grasp” by Celentano, and finish by saying 

“Good night Sandro”

 

 

Thanks.

In chronological order we thank all the people who have helped to make the life of Alessandro and his parents more acceptable and who we remember always with much gratitude

The grandparents who loved him so much Anna who in her first experience as teacher in a kindergarten accepted him without reserve.

 The lady professor who gave study advice and sent me to the elementary school which at that time was still tabu to handicapped children.

 The teacher in charge of pupil support in the elementary school; Gianna, who taught singing cheerfully, changing the words of the songs with appropriate phrases on various occasions and I have followed her example with irony for all of my life Piera, the school cleaner, for the great affection she gave him in the corridors when frequently the support teachers were not present and she is still our friend.

Alessandro, the elementary school teacher and choir master of the Orazio Vecchi choir and all the old choristers, Elisa, Paola,Salvatore,Piera,Gianna, Giuliano Sigrid….Beppe etc…who had accepted us and Sandro, sharing beautiful evenings together  eating, laughing and singing.

 The girls of the choir,Raffaella and Paola who for a period in the afternoon took it in turn to teach Sandro to read and write.

 The friends in the middle school who helped him to laugh  more.

 The lady professor of biology  Roberta Ricci to whom we always went for our frequent polyclinic appointments

  Our dear friend Giulia with whom we have passed many beautiful summers together with various assistants.

   Some assistants of Don Gnocchi

My colleagues who were always present at all his birthdays and all our other celebrations.

 Our friend Elio  who has sung for us and most of all, for Sandro making him more happy and calm.

The conscientious   objectors  Alessio, but above all, Mauro who we still find after many years if there is something we really need to be done and afterwards I take him home where his good mother makes an excellent lasagne which Sandro often remembered

 The assistant. Anna, who in the last years made it possible for my husband and me to take part in dancing lessons for a few hours per week and for such evenings remained to keep him company and we told her what we had been doing.

 The few nurses in the hospital who did not fall behind in caring for Sandro even when it was suspected that he had A.I.D.S. ,among whom Marina, who gave her support and company during the unending hospital nights when Sandro didn’t have a place in Re-animation, and thanks to the great competence of the lady cardiologist Dr.De Ros,. had together  made it possible that Sandro remained with us for another ten years.

 Some young volunteers who during the last years took him with them to the mass but most of all to the New year’s feast at the end of the century: Georgia. Attilio. Robert. Valeria etc.

 Dr.Zampino to whom by now we had to go more often for the frequent hospitalisation, and in whom Sandro had a blind faith letting him do all the examinations he needed.

 Annalisa who had taught me to write the WEB pages.

 Marilena who had offered to and corrected all this long story.

 The little cousins, Raffaella and Simone and his aunt Maria Pia and Amaldo who he loved very much because they were always close, most of all during the big celebrations and the long nights sleepless  awaiting cheerfully the arrival of the ‘Befana’.

 To all those who have found the courage to smile.

Thank you.

 

             Maria Grazia (Alessandro’s Mother )

 

 

 

                           

 

 

     

 

 

PEDIATRIA DELLA DISABILITA'

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Evviva Camilla é a casa!

Chi ha letto nei giorni scorsi della nostra Camilla suppongo voglia sapere come sta adesso.

Verbale - Assemblea nov. 2011

AISC - Verbale Assemblea 21/11/2011 - Policlinico GEMELLI – Roma

Obiettivi dell’incontro:

-         illustrare lo stato dell’arte e delle novità tecnico scientifiche, a cura dell’èquipe medica;

 -         illustrare le azioni svolte e future e la situazione di bilancio dell’Associazione.

Giuseppe Zampino – aspetti generali - focus epilessia, profili neurologici e nutrizione

Gli ambiti su cui si concentra il lavoro d’equipe in questa fase sono sostanzialmente tre:

-         Epilessia (pattern)

-         Profili neurologici (sonno etc).

-         Nutrizione (carenza vit D – osteoclasti e osteoblasti)

accrescimento

ACCRESCIMENTO

Nel tempo il problema della mancata crescita ponderale viene sostituito dalla ridotta crescita staturale. Raccogliendo le diverse altezze dei pazienti con CS con mutazioni HRAS, si nota che in media l’altezza si attesta a circa - 4 DS rispetto la curva di normalità (vedi figura). Alcuni bambini che presentavano deficit di GH hanno ricevuto trattamento sostitutivo, ma solo per alcuni si è notato un incremento staturale (Stein et al., 2004). Non è chiaro l’effetto anabolizzante del GH sulla cardiomiopatia ipertrofica (Kerr et al., 2003), come pure sullo sviluppo neoplastico (Gripp et al., 2000, Kerr et al., 2003)

Trattamento

Sorvegliare crescita con misurazioni seriate ogni 6 mesi.

Eseguire curva GH dopo stimolo in particolare se la velocità di crescita tende a ridursi

Se deficit GH discutere trattamento valutando possibili rischi, in particolare la possibile evoluzione della cardiomiopatia ipertrofica o sviluppo di tumori.

Se deficit GH parziale è preferibile non trattare.