Raul was always colour, vivacity, cheerfulness. An explosion of energy that enveloped and sucked in everything and everyone. An adorable brat.

He loved basketball, running, throwing plates and whatever was at hand; even hair-pulling, cheek-biting and pushing down slides came easily to him. But eating mc donald’s chips won out over everything. For those he always remembered the road. And then there were the blondes – who knows why, he always preferred them.

Years spent in trainers to keep up with his pace and away from illness. But while we were discovering the world and running, swimming, riding, eating, laughing, mucopolysaccharidosis took its course and stole his life, gradually giving way to falls, forgotten words, first choking, hospital runs, pain. Today, at almost 17 years old, Raul is no longer able to do anything: he does not walk, he does not speak, he feeds himself through a machine, he endures constant aspirations, but he remains the fighter he always was. He has never lost the determination with which he faces life, despite the fact that for him even simply breathing is a great effort. Raul is still an explosion of energy, albeit transformed. But he is above all love, so much love. The love that gives and teaches others to give, the love of life.

Many boys dream of standing out, while Raul would have liked to be just another boy, but instead he is a special boy, a Sanfilippo boy. πŸ’š

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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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