«Sor not imprisoned in my body». Alessia, 23 years old, originally from Nova Milanese, in the province of Monza and Brianza, doesn’t beat around the bush. Eight years ago she was diagnosed L’Friedreich’s ataxia and since then his body has become a prison. Nothing is like before. So she decided to write a letter via email to Prime Minister Giorgia Meloni. The reason? Not just tell her story but ask that Omaveloxolone, a drug that slows the progression of the disease and approved only in the USA, be released in Italy too.
Rare diseases, what is Friedreich’s ataxia
The newspaper told Alessia’s story The day. The girl has a rare disease that “affects one young person in 40 thousand” and, progressively, brings «to the inability to perform the simplest gestures: walking, swallowing, even speaking» explains the daily. A cruel disease for which there are no treatments. Only one drug has been shown to slow down the progression of Friedreich’s ataxia: Omaveloxolone. A drug already tested in America by a person affected by the same disease, with lots of benefits: “She’s back to eating on her own and can even stand up” says Alessia’s mother.
The letter to Giorgia Meloni: «I would like to live like a 23 year old girl»
Prime Minister Giorgia Meloni. (Getty Images)
Hence Alessia’s choice to write a letter to the prime minister so that she too can benefit from that drug. «I’m just a 23 year old girl and I should live like one, but I can’t. It’s like a cloud is always circling around me. And the wheelchair reminds me that I’m not like everyone else. As I ask you for help President Meloni» writes Alessia in her letter. And he talks about his dreams as a 23-year-old: «I would simply like to get up and be like all the others: go to work, have a car, plans for the future, dream of getting a house, falling in love, making friends and all the stupid things that girls my age do that I’m missing out on. Help me make possible what I have always thought was impossible for me.”
The unblocking of the drug in Europe
Alessia’s goal, therefore, is not simply to tell her story but to ensure that her story can raise awareness and lead to the availability of that drug which, at the moment, represents the only hope against the disease. «I would just like to make my problem known to be able to obtain the release of the drug here in Europe and not just abroad. Give me, and those like me who want to live, hope.”
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