He is Samuele, He is 9 years old, between his mom Francesca and his dad Thomas.

He was born to term but small, he quickly gained weight thanks to his grandmom’s succulent lunches and now his growth is in line with his age.

When he was 5 days old he was hospitalized for the first time, there’s an heart defect, and from that doctors found cerebral damages made by multiple strokes that had happened already on the first half of the pregnancy period and later on during the perinatal period, and the presence of a congenital cataract in both his eyes.

Those discoveries had the same effect of an earthquake and, for an instant, they made us feel lost…

…only for an instant.

Samuele’s big smiles restored our contact with reality, we had to roll up our sleeves and in no time our family, mom, dad, aunt and grandparents, huddled around him to face a path of surgeries in order to walk the long path of his neuromotor rehabilitation.

Which was very slow and difficult at first.

Around the 18th month of age we received the diagnosis, Samuele has a rare genetic mutation, the involved gene is COL4A1. What did it change from before? That an explanation had come, and that gave us the sensation of having an harbour. But that was only a sensation, because we were still sailing.

There is very little knowledge about this mutation and at least in Italy, there seems to be only few cases. Nobody in Rome, the city where Samuele was born. There is no cure.

There is nothing else to do rather than to concentrate on the rehabilitation, to make experiences, plenty of them. To live.

Samuele is growing up. He has a psychomotor retardation, He’s visually-impaired and he has a language delay.

Samuele, who for the first years was cheerful and calm, is slowly becoming very determined, and he is trying to be more autonomous and discovering the thrill of initiatives.

His tastes are maturing and there is no doubt…take everything away from him but books and music, lots of music!! And obviously fine food!

Now he’s attending the fourth year of primary school. Last years, in which we lived during the pandemic, like for a lot of children, brought Samuele some difficulties on an emotional level and for his relationship with other kids.

But Samuele is still basically a cheerful and pretty tenacious child, that lets himself get involved in new experiences and that likes being together with joy.

And nowadays with great enthusiasm he is discovering new ways to move…what a blast sports are!!!

W for climbing!

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