Since she was 8 years old, Alexis has lived with Duchenne’s disease. It is a rare genetic disease, which affects 2,500 people across France. One of the consequences of the disease for this 10-year-old boy, originally from Dijon (Côte-d’Or), is that he gradually loses the possibility of moving around. Patients can also develop behavioral problems, heart problems or difficulty breathing. On the eve of this 35th Telethon, he does not lose hope and remains enthusiastic despite the illness.
Two passions: video games and travel
Like many boys his age, one of Alexis’ passions is video games. In his house, there is a computer but also several consoles. But what really excites him is traveling. “I would like to go to places that I have never been to before, like Greece, the United States or Japan. The United States is to see New York and its big buildings, Japan for manga like Naruto and Greece, because I saw a video that made me want to go.“, explains the CM2 student.
Alexis has dreams in her eyes. The problem is this disease that prevents him from moving around as he would like. It gradually deprives him of the ability to walk. The ordeal is hard for the young boy, for example at school. Faced with the ordeal, he sometimes manages to laugh about it: “DIn the playground, I am with my wheelchair which goes over 10 kilometers / hour, so I race with my friends“.
– Toky Nirhy-Lanto
A crippling disease
The boy has a sense of humor, but he also knows how to be realistic. The disease he has to live with. “It’s a degenerative disease so my muscles are weakening“, Alexis saddens. Not enough to shake the mind of the young boy, who hopes that a solution is possible:”I would like them to find a cure. It would be the way for me to be able to do the sport I want. There, the only sport I can do is swimming, when I would like to play soccer and run“.
On December 3 and 4, France Bleu Bourgogne is mobilizing for the Telethon. To help the sick too, you can make a donation to 36.37 and on the website telethon.fr.