It’s off again for a weekend of mobilization against myopathies. The 35th edition of the Telethon starts this Friday evening. The charity marathon organized by the AFM makes it possible to collect donations for research and of support families affected by these rare genetic diseases. This is the case of Martin Fleurot, 11 years old, suffering from facio-scapulo-humeral myopathy. The young boy lives in Champvans near Dôle, he felt the first symptoms of his illness at 5/6 years old, “running slower than other kids in my class.”
His progressive disease weakens his muscles. After the cut of the diagnosis, his family quickly re-mobilized, explains Marie, Martin’s mother.
Finding out that it is a disease for which there is no cure is very difficult. We decided that we weren’t going to close any doors. We do not give up anything, for example we love the mountains and we continue to go to the mountains. We found a joëlette so we could take Martin on the trails.
Today the young boy is in 6th grade, he takes his lessons on a computer and continues to walk at home. Outside, he uses an armchair. In 2020, the family home underwent major renovations: an elevator and a swimming pool for Martin’s physiotherapy exercises. A project supported by the AFM-Telethon. “When you want to put a lift, it’s 25,000 euros. When you know that institutional aid helps up to 10,000 euros for ten years, that’s not enough. The AFM came to surprise us with this proposal. assistance for disability compensation. “
These arrangements and the numerous physiotherapy, occupational therapy and osteopathy sessions make it possible to slow the progression of the disease a little. “I continue to walk quite naturally, so as long as I can, I’m enjoying it. The main thing is to keep walking as long as possible.”
– Marcellin Robine
The Telethon also allowed Martin to exchange views with other young people suffering from the same disease as him. This Saturday, the boy will be with his family in the audience of the television show in Paris. He does hope that as with other diseases, research will quickly advance to allow him to continue walking.