LND Famiglie Italiane
The Association of Italian families involved
in the fight against the Lesch-Nyhan
DIEGO'S HOPE [ 1997 ]

Diego, now 32 years old, was one of the main characters of Chapter 9 of "An (Im)Possible Life" the book Paola wrote in 1997.

Diego's hope

Angela, the mother of Diego a 17 year old young man, confirms, how the urgency of a "special" support for the families is true and how research for very special rehabilitation is necessary.

Her words, and her recollections are very precious for me. I wish just to underline the aspect of the disease, that afflict many families, of which I have little experience.
The strange form of self-injury that causes these boys, so sensitive and in most cases delicate, to have the impulse of verbal aggression, coarse language and bad behaviour, the consequence of which is to inflicting on themselves psychological

Here is an example of this typical behaviour:

..." I remember a Christmas dinner. The guests were all dear people. Diego was chatting like everybody, but he was paying attention to Maurizio, his best friend.
Maurizio is a serious, reflective and patient old man who has been helping Diego since he was a child.

Diego, during the chat, begun to insult him and spat at him insistently.

As we saw what he was doing, we changed our seats, without attaching any importance to what was happening.

During the dinner the atmosphere became lively. My husband and I lost sight of Diego who continued in his behaviour towards Maurizio up to exasperation.

The final reaction was explosive and unexpected: Maurizio, red with anger, threatened Diego affirming that he would not see him anymore.

Diego became serious and bowed his head. We left the party immediately. I cannot describe our reaction: we felt desperate of what had happened, we had lost a precious friend.

In a short time things came out right. Maurizio was close to us again.

We know Diego well, but we are never prepared enough to precede and face his reactions.

Nobody would believe that Diego regrets and weeps desperately after having insulted somebody he loves and that he can be a cheerful companion for his schoolmates and for our family."...

I find very interesting too, the events linked to learning:

..."With regards to school I can say that the greatest problems are to be referred to the teachers. In fact Diego learns well, but his behaviour leads to misunderstanding.

I remember that one day he returned home from school in tears. The assistant told me the whole story: Diego was in the classroom during the Italian lesson.
The supporting teacher was not there because she had been called by the Director. The Italian teacher was speaking and during a pause, Diego swore aloud, in the silence. All the students burst into laughers.

The Italian teacher, very angry, sent him out of the door, in the passage.

The second year of elementary school and the third year of intermediate school were the worst because those supporting teachers did not understand him.

After one year of incomprehension and spites, here is the final exam. Diego is calm although he knows that he must pass a hard test. All the teachers are waiting for him in the classroom.
He greets us with a reassuring smile and lets himself be led in the class.

We, the parents, look at each other silently and anxiously. We wait. At first two teachers come out the room. They seem to be in good humour, they even laugh. As they realised we had questioning glance they reassured us: " He made it".

The History teacher is radiant: "We all know who Mussolini was and what he has done, but only Diego - with a four letter word - succeeded in rendering the idea".

And also thanks to Mussolini, Diego got the diploma of "Scuola Media".

Now our boy attends the fourth year of secondary school, he uses the computer,is well integrated and has a lot of friends.

I report what his teacher has said: "I was very struck, last year, by Diego when I was doing a lesson on the "Divine Comedy".
He was enchanted, with wide open eyes and with bated breath. Then, when I tested him, he showed to have understood well the essential concepts.

This year, for the first time, he has asked, once or twice, to read the texts by himself. He reads with difficulty, but he gets great satisfaction from it".

His classmates and the boys from other classes, after being at first a little bewildered, have begun to call him and to bring him in class with them, showing to appreciate his presence".

Angela concludes:

"Diego does not have his teeth anymore. He has his arms in splints. Everything around him is padded. He underwent plastic surgery on his nose.
He wears a glove to defend one hand from the other. Nevertheless I can say that he has never lost his will to live and his hope to recover. Almost everyday he says: - If I could walk...I would do...I would go...I would study for...etc. -"

Diego's hope is our hope, too.

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