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Personal Experience

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Emanuele’s story

Language: English
Country: Italy
Typology: patients and relatives
I was asked to tell the story of my son Emanuele, and therefore, also our experience as parents of a "special" son. Emanuele was born on 8/07/1991, when his mother was already forty-three years old. He was a splendid child (each child is beautiful for his mother), he was lively, intelligent and he could not be still for a moment. Problems started in 1998, in December, when he fell ill and he was diagnosed with ALD (after four months of analysis, biopsy, CAT scan, resonances and whatever else), that stands for Adrenoleukodystrophy, a "devastating disease". In a few months (he was seven years old), Manu stopped speaking and walking. In May, 1999, he suffered from a respiratory crisis: he spent a night in intensive care and a week in the hospital connected to various machines, then, on his return home, "the worst started", as the neurologist at the Regina Margherita told me. He wept day and night, he did not want to eat and slept little: I believe it was not only physical pain. You feel as if you are dying, you would like everything to end at once, you would like to close our eyes and not to wake up any more. Then, you collect all the strength you have because you know he has the right to live his difficult life at its best and, day by day, you discover many new resources in yourself and also in him. It has not been and is not easy because parents must learn to be also: doctor, nurse, psychologist, expert in homeopathy, nutritionist, physiotherapist. When you are lucky, you have the support of the family doctor or the various specialists; other times, you can only rely on the experience and mistakes that, little by little, make you learn and become a great experience of life. Emanuele attends a day centre "three hours a day" in the afternoon (the operators come to our house for three hours in the morning) and spends his time with the operators who amicably care for him. He goes for walks, goes to the swimming pool, listens to music, goes to the cinema, to concerts, loves animals, in particular dogs and, when they can, they take him to kennels or, during summer, to farms where there is plenty of animals. These are the beautiful things he has managed to win, however, there is the other side of the coin: convulsions, reflux, catarrh in the throat, various pains all over his body, deformed foot, bedsores, aphthas, fungi and so on and so forth. Since it all began, twelve years have passed. Now Manu is eighteen years old but he seems a fourteen/fifteen year-old boy, he weighs 25/26 kg, and he is 1.50 meters tall more or less; his mother is sixty-two and shows her age. Manu is fed (now) with a spoon or with a glass (when he eats soup), he likes Coca-Cola (without caffeine), eats homogenized baby food or freeze-dried meat, yoghurt, vegetable soups and large fruit smoothies made by his mom. He no longer weeps when he is hungry, he does not sleep at night, but, if he has no pain, he remains quiet. We have found a sort of balance. How many things we have learned from this special angel. He has learned to best manage the few things he can do and he has managed to do it very well and we have learned to understand without words what he wants to tell us with his eyes, sniggering, tears, various tensions of his body. Emanuele is a much loved child: he loves being pampered, staying in people’s arms, being kissed and caressed, I call him "Lovelock " because when he is near me I cannot help kissing him. This is, in a few words, the story of our "SPECIAL" son, disabled for the community.

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