Clara is three years old

Three years of pure joy and sheer stubbornness. Clara was born with a swollen eye because in the last two months of pregnancy she had put herself in a fighting stance, with a fist defending her face. Along with a diseased gene, she inherited the unyielding tenacity of those who do not want to give up. Surrender to the end of the ice cream, to the denied Coke, to the needle entering the vein, to the bronchitis exhausting her, to the imposition of hearing aids.

Clara is literally a born fighter. On the ward at the Bambin Gesù, she is nicknamed ‘Terminator’ by nurse Priscilla. And we can assure you that when she headbutts the shopping trolley because she demands slices of ham in the deli section of the supermarket, we think Priscilla is quite right. Clara, however, is not austere, she does not take kindly to living as the victim of a life that has not actually been all that generous to her. Clara has that courageous candour of someone who knows how to appreciate every little thing. You only have to see her eat with that ecstatic gusto to believe it. We have very few photos in which Clara sleeps – because sleeping she does not like at all – but hundreds of photos in which she eats.

Clara is a child free of all conventions. She does not care if she is often told that she should be more graceful. She walks sturdily, proudly carrying her cloud of blond hair like a rock star from the eighties, with her big belly out and her arms dangling. Clara is cheerful: she sings without words, dances without turns, draws but only on the walls of her house, gallops her dog but no horse, does somersaults without rolling, jumps without being able to take her feet off the floor, flips through the pages of books she will never learn to read, speaks with (few) words, but also uses her eyes, grimaces and hand gestures, laughs out loud if someone trips. She is a ‘cuorallegro’, all attached, as her grandmother always tells her

Clara is a Sanfilippo child and is a happy child who in three years has taught us how to be in the world as we parents have not learnt in thirty. Our commitment is to hope and persevere in the search so that this joy of living will never die out, or at least not so soon. For us it is a duty, for you an act of benevolence

Support research

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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