The stories of our children


Clara is three years old.

Three years of pure joy and sheer obstinacy. Clara was born with a swollen eye because in the last two months of her pregnancy she had put herself in a combat position, with a punch in defense of the face. Together with a sick gene he inherited the unyielding tenacity of those who do not want to give up. Surrender to the end of the ice cream, to the Coca Cola denied, to the needle that enters the vein, to the bronchitis that exhausts it, to the imposition of hearing aids.

Clara is literally a born fighter. In the ward, at the Bambin Jesus, she is nicknamed by nurse Priscilla as “Terminator”. And we assure you that when it tests the shopping cart because it demands slices of ham at the gastronomy department of the supermarket, we think Priscilla is right. Clara, however, is not austere, she is not there to live as the victim of a life that has not actually been so generous with her. Clara has that brave candoe of those who appreciate every little thing. You only have to see her eat with that ecstatic taste to believe it. We have very few photos where Clara sleeps – because sleeping no, she doesn’t like it at all – but hundreds of photos in which she eats.

Clara is a child free from all conventions. She doesn’t care if they often tell her she should be more graceful. She walks massively, proudly wearing her cloud of blonde hair like a rock star from the Eighties, with her belly out and her arms pendant. Clara is sunny: she sings without words, dances without turns, draws but only on the walls of the house, gallops her dog but no horse, does somersaults without rolling, jumps without knowing how to detach her feet from the floor, browses the pages of books she will never learn to read, speaks with (a few) words, but also uses eyeballs, grimaces and hand gestures , laughs to crack if someone stumbles. He’s a “cooker,” all attached, as his grandmother always tells her.

Clara is a child Sanfilippo and is a happy child who in three years taught us to be in the world as we parents have not learned in thirty. Our commitment is to hope and insist on the quest so that this joy of life will never be extinguished, or at least not so soon. It is a duty for us, for you an act of benevolence.

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