The stories of our children


Alessia is nineteen years old, she is a young woman who, however, lives a different destiny from her peers. Nineteen years old, a beautiful age, which marks a passage: the university, the driver’s license, the boyfriend, the late outings with friends, the bonfires by the sea. Alessia, however, has Sanfilippo syndrome and bears her marks on her. No driver’s license, university or boyfriend, Sanfilippo has decided for her.

It is terrible the sense of nostalgia for what you did not have, for what could have been and is not. Mucopolysaccharidosis is small, a clock with hands turning backwards. It’s hard for a parent to see their daughter laughing, talking, walking, playing, relating to others, maybe talking, and then suddenly seeing her go back and slowly fail to do anything anymore. Alessia is tenacious, she no longer speaks with her mouth but makes her eyes clear. With his gaze he makes you understand all his needs, if he is hungry, if he is sleepy, if he has a desire for a hug.

Sanfilippo bends her knees, drops even the most prepared parents. But Alessia’s parents and her sister Giulia do not de-democratize, they are always ready to get up and be stronger than before. They remain solid, always by Alessia’s side, no matter what happens.

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