The stories of our children


Nicola is a 12-year-old boy.
When he was born he was handsome big, chubby, with black hair, like mom and dad. It was precisely the hair that immediately underwent a transformation: they became, in fact, for a while blond honey and then returned brown. Now the hair covers the eight scars resulting from a gene therapy surgery done at the age of 4 in Paris. Up to 19 months everything was normal: Nicola played, danced, supported Naples, was a skilled juggler, managed with great skill to turn the rings on themselves we do not know how many times! Today he does not turn the rings, but is the protagonist of life bypassing all the difficulties.

Until 2 years Nicola never got sick then came the recurrent colds and his crushed nose that dripped continuously. 3 years and still very few words, but here are the first visits and suspicion of accumulation disease; so begin the first searches on the internet “lysosomal storage disease” and with them the first reactions of the parents: “but no, it will not be so!”. Instead comes the diagnosis: Mucopolysaccharidosis 3B.

His vocabulary has shrunk over the years, but the few words he can still pronounce express all the affection he has. He is a cuddly, on the most beautiful he embraces you and holds you, often spreads his arms and wants to do the “rocking”, however, someone of large size is needed to please him because Nicola, is quite heavy, loves to eat very much. He also loves to take long walks, although with some difficulties in his left foot; he loves to listen to descriptions and stories during walks and helps in his own way those who accompany him because he does it without saying a word.

His great love is the sea, living in Ischia could not be otherwise! His passion for swimming. But he has another love: singing, especially hearing Waka Waka sing and dance, maybe he is in love with Shakira! With joy he observes the children at the parties, especially when they sing, dance and his bursting smile infects everyone. This is Nicola, a fighter born because the disease was already there at his birth, but from that moment he kicks it as he does with the ball.

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