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Update
The 35th edition of the Telethon kicked off on Friday December 3, sponsored by singer Soprano. Meeting with Pierre, 15, who fights against a genetic disease.
At 15, Pierre suffered from myopathy of the girdles, a rare genetic disorder that weakens his muscles. Climbing the stairs, walking fast or running… These seemingly simple actions, but complicated for the teenager. The only solution to hold on: lots of rest and support. But Pierre must face the facts, his disease is progressing: “This disease has taken away a lot of time with my friends. In high school, I’m more tired so I have to take some time to rest, and I enjoy a little less.”
His mother recounts with great emotion the day she learned that no treatment existed to help her son: “The sky has collapsed on us”. But the family is not let down. She has even embarked on the construction of a house in which Pierre can easily get around in a wheelchair. A situation that the young man tries at all costs to delay. “He is very brave, it is not easy, not everyone would succeed”, relates one of his friends. They all hope to see research progress to help Pierre.