The stories of our children



Raul has always been color, liveliness, joy. An explosion of energy that enveloped and sucked everything and everyone. An adorable brat.

He loved basketball, racing, throwing dishes and anything at hand; even the tug of hair, the bite of his cheek and the pushes down from the slides came great to him. But mc donald’s chip eat won over everything. For those he always remembered the road. And then there were the blondes… I wonder why, he always preferred them.

Years spent in sneakers to keep up with his rhythms and away from illness. But while we were discovering the world and running, swimming, riding, eating, laughing, mucopolysaccharidosis taking its course and stealing his life, gradually giving way to falls, forgotten words, early suffocation, hospital runs, pain. Today, at almost 17 years old, Raul is no longer able to do anything: he does not walk, does not talk, feeds through a machine, endures continuous aspirations, but remains the fighter of all time. He has never lost the grit with which he faces life, despite the fact that for him even the simple breathing is a great effort. Raul is still an explosion of energy, albeit transformed. But he is above all love, a lot of love. The love he gives and teaches others to give, the love for life.

Many guys dream of standing out, while Raul would have liked to be simply a boy like so many and instead he is a special guy, a Sanfilippo boy. 💚

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