Chiara is 6 years old and is a bundle of energy. She is a hurricane that passes by and overwhelms you but leaves joy attached to you. Chiara cannot stop, she has too much to do, to discover, to touch. But have you seen how beautiful the world is around? Chiara cannot resist, she has to discover it all, she is a true explorer.

Chiara speaks little but laughs a lot. A contagious laugh, her mum says she also laughs with her eyes. The same eyes that become heart-shaped when she sees her daddy. Chiara, being the explorer she is, cannot stay indoors: she has to go out and be in the open air. So off she goes on her bike, on the merry-go-round, playing ball! If she really can’t stay outside, then she dances, because she can’t stay still. Chiara dances for hours, she has beautiful choreographies in mind but she can’t really give her body the right commands, so in the end she just jumps. But you should know how she jumps! Never have I seen more beautiful jumps.

Chiara also loves the company of the other children but because she cannot speak, she shouts. Don’t think it’s a tantrum, however, the screams (as for all children after all) are the way she expresses her emotions, good and bad. The louder they are, the more they make her scream. Chiara, besides being a dancer and an explorer, is also a personal trainer. She keeps her whole family fit. Mum, dad and grandparents run around all day to prevent -in vain- her from making a mess at the speed of light. You would see what little figures they are!

Chiara is also a big Jovanotti fan. One of his songs says: ‘There’s no mountain higher than the one I won’t climb, there’s no bet more lost than the one I won’t play’. For Chiara, Sanfilippo is both mountain and bet. A high, impassable, very steep mountain. The real bet is to climb it, this mountain. Help Chiara to become a Mucopolysaccharidosis mountaineer. Chiara wants to get to the top, that’s her bet. From there, they say, the view is breathtaking.

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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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