Nicola

Nicola is a 12-year-old boy.
When he was born he was big, chubby, with black hair, like his mum and dad. It was his hair that underwent a transformation: it became honey blond for a while and then turned back to brown. Now the hair covers the eight scars resulting from a gene therapy operation carried out at the age of 4 in Paris. Until he was 19 months old, everything was normal: Nicola played, danced, supported Napoli, was a skilful juggler, and managed with great skill to turn the rings on themselves no one knows how many times! Today, he doesn’t spin rings, but he is a protagonist in life, circumventing all difficulties.

Up to the age of 2, Nicola never got sick, then came the recurring colds and his little squashed nose that ran continuously. Three years old and still very few words, but here came the first visits and a suspicion of an accumulation disease; so began the first internet searches ‘lysosomal accumulation disease’ and with them his parents’ first reactions: ‘but no, it won’t be like that! Instead came the diagnosis: Mucopolysaccharidosis 3B.

His vocabulary has diminished over the years, but the few words he still manages to pronounce express all the affection he has. He is a cuddler, at the most beautiful moment he hugs you and clings to you, he often spreads his arms and wants to do the ‘rocking’, you need, however, someone of large size to accommodate him because Nicola, he is quite heavy, loves to eat a lot. He also loves to take long walks, although he has some difficulty with his left foot; he loves to listen to descriptions and stories on walks and helps those accompanying him in his way because he does so without uttering a word.

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

Sostieni la ricerca

Al momento per i nostri piccoli non c’è una cura, ci sono solo dei piccoli espedienti per cercare giornalmente di convivere con i sintomi ma c’è una cosa importantissima su cui dobbiamo avere speranza: la ricerca.