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New birth of Jules, 5 years old, suffering from myopathy



Article by

Griffond, S.Leleu, L.Auger, F.Commault, G.Liaboeuf – France 2

France TVs

The 35th edition of the Telethon kicks off on Friday, December 3rd, sponsored by the soprano singer this year. The France 2 team met Jules, 5, who suffers from myopathy, a rare genetic disease.

Best start to 30 hours of live streaming. The 35th edition of the Telethon opens on Friday, December 3 at 6:45 pm in France 2. During this charity marathon, viewers will discover the faces and paths of children like Victoire, Adrien or even Jules.

Since his birth, 5-year-old Jules has suffered from myopathy, a disease that is manifested by severe muscle weakness and difficulty breathing. In most cases, children die before the age of one year. On January 29, 2020, Jules was able to receive a gene therapy injection as part of a clinical trial. It didn’t take long to feel the first effects of the treatment. “Fifteen days after the injection, Jules started sitting still, although he had barely held his head before. Within two months, he started talking. We didn’t think it would work at this point.”says his mother.

As for his father, he is “Renaissance” : “He discovers himself and we discover him at the same time”, Through treatment and weekly sessions with a physiotherapist. Stand up, ride a bike…sounding simple, but exceptional moves for Jules. “I just saw a video of him getting smaller. We never thought we’d see him one day with an actor, smiling, standing up.”Explains Soprano, who had the opportunity to meet the little boy. The singer, the godfather of this 35 Telethon Edition, he was a guest of Julian Bugier on the set of 13 Hours of France 2 on Friday, December 3rd.

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