There is a thin but tenacious thread that binds Italian squares, home kitchens and research laboratories. It is the same thread that tightens again, every spring, with the “Io per lei” campaign of the Telethon Foundation, dedicated to the so-called “rare mothers”. Women who do not make noise, but who bear the daily burden of a genetic disease in the family.
From 1st to 3rd May, the “Biscuit Hearts” will return to over 2,500 collection points throughout Italy: a box, three variations of shortcrust pastry, a minimum donation of 15 euros. A simple gesture, but one that fuels a complex machine: scientific research on rare genetic diseases.
Behind this initiative there is a history spanning more than thirty years, born from the appeal of a group of mothers from the Italian Union for the Fight against Muscular Dystrophy. Since then, the Foundation has invested hundreds of millions in research, helping to transform hopeless diagnoses into possible treatment paths.
As the general director Ilaria Villa explains, «all this is possible thanks to the participation of volunteers and the generosity of donors». But words alone are not enough. You need faces. Stories are needed.
Amerigo, thirteen years and a silent battle
Amerigo is 13 years old and lives in the province of Bergamo. Since he was born he has lived with a congenital myopathy, a hereditary neuromuscular disease that progressively weakens the muscles. He moves with an electric wheelchair that he drives with a joystick, speaks without difficulty, and has a declared passion: football, with his heart beating for Atalanta.
The diagnosis came early, at 18 months. Even before that there are signs that don’t add up: difficulty in movement, delays in motor development. Then the genetic tests and the confirmation: a rare disease, with no definitive cure.
That’s where Alessandra, his mother, comes into the picture. Not with sensational gestures, but with stubborn determination. He studies, informs himself, looks for doctors, builds a network. And above all he decides one thing: Amerigo must live a full life.
It wasn’t easy. The family has completely reorganized itself: home, habits, rhythms. Friends have thinned out, some relatives have stepped aside. «A mixture of fear and embarrassment», says Alessandra. But she doesn’t stop.
A “normal” life, in its own way
Amerigo is not a boy who gives up. He does physiotherapy, uses respiratory supports, attends school with his classmates. In the afternoon he studies, draws and explores the world of artificial intelligence.
He plays wheelchair football, takes part in Wheelchair GPs, events that mix competition and play. He goes to the stadium with his father. He dreams, even if he doesn’t always say it out loud.
He has three brothers, with whom his relationship has gone through difficult times but has remained strong. At home we fight, we grow, we help each other. Like in all families. Only here every gesture weighs more.
And then there is that special bond with the mother: complicity, trust, shared decisions. A silent alliance that holds everything.
Research as the only path
Alessandra has no illusions, but she doesn’t give up either. She knows a cure may not arrive in time for her son. But he insists on one point: we must continue.
«We need to talk about research, raise awareness among people… even something that stops the disease would be enough», he says. And he adds, without mincing words: “He who doesn’t know is because he doesn’t want to know.”
It’s a weighty sentence. Because it involves everyone.
A small gesture, a big responsibility
The Biscuit Hearts, with their carefully designed packaging and different flavours, are designed as a gift for Mother’s Day. But it would be a mistake to stop there. Inside that box there is not just an artisanal product. There is an investment in research, concrete support for families who struggle every day.
And there is also an implicit question: how much is a gesture of solidarity really worth?
The answer, perhaps, lies precisely in stories like that of Amerigo. Where normality is not given, but achieved. And where every step forward, even the smallest, has the weight of a victory.
