Alessia Corvaia is a fighter. He demonstrated this in almost a year of struggle with the institutions: of battles involving phone calls, emails even to Prime Minister Giorgia Meloni, interviews. A battle that led to the approval by AIFA (Italian Medicines Agency) of Skyclars, a drug already in use in the United States and other European countries for the treatment of Friedreich’s ataxia, a hereditary neurodegenerative disease, from which the girl is affected.
The side effects
Alessia started therapy almost a month ago. Many expectations, hopes combined with that hint of fear that, perhaps, with her that drug would not have had the desired effects. But how is Alessia today? “At the beginning it wasn’t a walk in the park – says the mother -. The first 10 days were very very difficult. With the side effects of severe migraine, nausea, abdominal pain, dizziness that knocked her out.”
The battle continues
But Alessia, who is 22 years old and studies Psychology, doesn’t give up. He knows that the battle is hard and long and that drug he is taking unfortunately will not lead to recovery. But he carries on with tenacity, looking with great hope at the small improvements he feels in that body which has been dealing with Friedreich’s ataxia for 7 years. “Luckily he is better now – continues the mother -. We haven’t seen any big changes. For now Alessia notices a little more resistance in standing supported.” Small signs that give hope and hope to continue fighting for the young woman from Nova Milanese and her loved ones who have always supported her in this battle. “Our hope is to have further improvements – concludes the mother -. Alessia recently started therapy (since October 9th, ndr). We know that the drug doesn’t cure, but allowing Alessia to get better would already be a great victory. Waiting for that gene cure that will truly find a solution to my daughter’s illness.”
The dream of meeting Giorgia Meloni
Meanwhile, Alessia hopes to soon be able to meet Giorgia Meloni too. On the eve of the start of therapy the girl had sent a letter to the prime minister explaining her desire to meet her in person. “I look at the future now with optimism and with that glimmer of light that before was only dark and black. I want to commit myself to one day being a good psychologist and helping the many people who need it, I want to be useful”, she wrote in the letter with that smile of hers and desire to help others which give her the strength to face even the most difficult moments of his illness.
Alessia Corvaia: Fighting Like a True Champion
Meet Alessia Corvaia, a 22-year-old hero from Nova Milanese who’s not just fighting against the odds; she’s flipping the script on stubborn institutions that appeared to be less fun than a trip to the dentist. After almost a year of ringing, emailing, and pleading with the likes of Prime Minister Giorgia Meloni (yes, that Giorgia Meloni), Alessia has finally reached a milestone: the approval of Skyclars, a drug that’s already been playing superhero in the US and other corners of Europe for those suffering from Friedreich’s ataxia. Think of it as a knight in shining armor with a prescription pad.
The Side Effects: It’s Not a Walk in the Park
Sure, Alessia is on her way to tackling her condition, but let’s not pretend it’s all sunshine and rainbows. As her mother puts it, the first ten days were “very very difficult.” That’s a polite way of saying it was like walking through a field of LEGO bricks barefoot while listening to a continuous loop of your least favorite pop song. Severe migraines, nausea, abdominal pain, and dizziness? It sounds like Alessia’s body threw a wild party for side effects and forgot to invite her.
But don’t count Alessia out just yet! With the tenacity of a kid chasing an ice cream truck, she’s holding on despite the challenges. “Luckily, she is better now,” her mother reports—an understatement if there ever was one. No, she’s not running marathons just yet, but a little extra resistance while standing? A small, yet significant win in this epic battle. After 7 long years facing Friedreich’s ataxia, any improvement feels like an Olympic gold medal.
The Battle Continues: Hope Amidst Hardship
Alessia’s journey is far from over; if anything, it’s like the latest superhero sequel where the plot thickens. There’s no magical cure in sight, and yet she perseveres. “The hope is to see further improvements,” her mother expresses, and who can blame her? We all want that happy ending—unless we’re watching movies where the dog dies, because who needs that heartache? The family is now holding onto that glimmer of hope that Skyclars will be the first step towards a brighter future, not just for Alessia, but possibly for others as well.
A Dream Meeting: Giorgia Meloni, Are You Listening?
Aside from fighting for herself, Alessia has her sights set on meeting scandalously busy Prime Minister Meloni. Yes, she had the audacity to drop a heartfelt letter in the PM’s inbox—because why not aim for the stars? With dreams of becoming a psychologist, Alessia is determined to make a difference in people’s lives as she continues to face her own battles. “I want to be useful,” she insists, which is a noble aspiration for anyone—especially someone who’s had to adult way earlier than most. It seems she’s gone from being the patient to potentially becoming a beacon of hope for others facing similar struggles.
So here’s to Alessia—an emblem of resilience and grit! May her determination inspire the rest of us to keep fighting, not just for ourselves but for a world that can sometimes feel as bleak as a rainy Monday morning. Let’s hope she meets Meloni and shares her story because if anyone can change minds, it’s the girl who’s learning to stand up amidst the storm.
**Interview with Alessia Corvaia: A True Champion in the Fight Against Friedreich Ataxia**
*Interviewer*: Alessia, it’s inspiring to see your determination in battling Friedreich Ataxia and advocating for the approval of Skyclars. Can you share with us what motivated you to take on such a significant fight with the institutions?
*Alessia Corvaia*: Thank you! My motivation came from a deep desire to get access to treatment that could improve my quality of life. I’ve been living with Friedreich Ataxia for seven years, and when I learned about Skyclars being available in other countries, I felt it was my duty to advocate for myself and others like me. I wanted to communicate our needs directly to those in power, which is why I reached out to everyone, including Prime Minister Giorgia Meloni.
*Interviewer*: That’s incredible dedication. Now that you have started the therapy, how have you been feeling?
*Alessia Corvaia*: The first ten days were really tough, to put it lightly. I experienced severe migraines, nausea, and dizziness that made daily life challenging. It was not a walk in the park, as anyone with a chronic condition might tell you. However, I’m starting to feel better now. I’ve noticed some improvements, like increased resistance when standing, which gives me hope for further progress.
*Interviewer*: It’s great to hear there are some improvements, no matter how small. How do you maintain your spirits during such a difficult journey?
*Alessia Corvaia*: I have an amazing support system—my family, friends, and even the community fighting for the same cause. Their encouragement keeps me motivated. Plus, I have goals for my future, like becoming a psychologist. I want to help others who are struggling, and that vision pushes me to keep going, even on the hard days.
*Interviewer*: That’s a beautiful aspiration, Alessia. Speaking of the future, you expressed a desire to meet Prime Minister Meloni. What would you like to discuss with her?
*Alessia Corvaia*: I’d love to share my story and advocate for more awareness and support for people with Friedreich Ataxia. This disease often remains in the shadows, and I hope to see more initiatives that can help patients like me. I believe collaboration with the government could lead to better resources and perhaps a brighter future for those facing similar battles.
*Interviewer*: You’re indeed a beacon of hope. Before we finish, what message do you want to share with others who may be fighting similar battles?
*Alessia Corvaia*: Stay determined and never lose hope. It’s okay to have tough days; what matters is that we keep fighting for ourselves and for others. Small victories matter. With the right support, we can make noise and advocate for the change we need. Together, we can flip the script on these challenges.
*Interviewer*: Thank you, Alessia, for sharing your inspiring journey and insights with us. Your bravery is truly remarkable.
*Alessia Corvaia*: Thank you for having me! It’s vital to keep these conversations going.
