Alessia is nineteen years old, a young woman living a different destiny from her peers. Nineteen, a beautiful age, marking a transition: university, a driving licence, a boyfriend, going out late with friends, bonfires by the sea. Alessia, however, has Sanfilippo syndrome and bears its marks on her. No driving licence, university or boyfriend, Sanfilippo has decided for her.

The sense of nostalgia for what one has not had, for what could have been and instead is not, is terrible. Mucopolysaccharidosis is infectious, a clock with hands that turn backwards. It is hard for a parent to see his daughter laughing, talking, walking, playing, relating to others, maybe talking, and then suddenly see her turn back and slowly not be able to do anything anymore. Alessia is tenacious, she no longer speaks with her mouth but makes herself understood with her eyes. With her gaze she makes all her needs clear, if she is hungry, if she is sleepy, if she longs for a hug.

Sanfilippo bends her knees, makes even the most prepared parents fall over. But Alessia’s parents and her sister Giulia do not give up, they are always ready to get back up and be stronger than before. They remain solid, always at Alessia’s side, whatever happens.

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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.

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