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The 35th edition of the Telethon begins Friday evening, sponsored this year by the singer Soprano. The France 2 teams met Jules, 5, suffering from myopathy, a rare genetic disease.
Top start for 30 hours of live. The 35th edition of the Telethon opens on Friday December 3 from 6:45 pm on France 2. During this charity marathon, viewers will discover the faces and paths of children like Victoire, Adrien or even Jules.
>> DIRECT. Follow the 35th edition of the Telethon to help research on rare diseases.
Since birth, 5-year-old Jules has suffered from myopathy, a disease 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 an injection of gene therapy as part of a clinical trial. The first effects of the treatment did not take long to be felt. “Fifteen days after the injection, Jules was starting to sit still, although he barely held his head before. Within two months, he started talking. We didn’t think it was going to work at this point. “, says his mother.
For his father, it is a “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… Actions that seem simple, but extraordinary for Jules. “I had seen a video of him smaller. We never thought we would see him one day with repartee, smiling, standing up.”, explains Soprano, who had the opportunity to meet the little boy. The singer, godfather of this 35th edition of the Telethon, was the guest of Julian Bugier on the set of the “13 Hours” of France 2 on Friday 3 December.