Suffering from a rare and incurable disease, Béziers resident Sofian Ribes will shine in the cinema

Sofian Ribes suffers from ataxia-telangiectasia, a rare and incurable syndrome, which affects his muscles and has forced him to use a wheelchair since he was 2 years old. Now aged 19, the young man struggles through his association “Sofian against ataxia” to make the subject known to as many people as possible. Always smiling, Sofian explains how the illness happened: “It’s a syndrome that appeared very early, we were able to put a name to it shortly after. Caused by a genetic disorder, it affects me greatly and I have to resort to a chair because my muscles are also affected. I also live with a prosthetic eye because I had cancer there.”

A daily fight

Eager to raise awareness of this disease and raise funds with his association, the boy is working to raise awareness among the public as much as possible, all with the constraints of a busy daily life: “I have several physiotherapy sessions per week. Currently, I am testing the Allyane method which could give good results.” Virginie, Sofian’s mother, says: “It’s a neurological reprogramming system. Our physiotherapist, Guillaume Peyre, was able to export the concept to Béziers. All of this remains free, the deal being just to make this initiative known.” An exchange of good methods to fight against the disease and give all the means, while life expectancy does not exceed 20 years on average after diagnosis.

Artus, the unexpected boyfriend

In this spirit of media coverage, Sofian entered the light. Her mother organized several events, such as lotteries, initially to finance care. Then the cancer (now defeated) arrives and interrupts the expensive treatment, forcing the family to reconsider their plans to avoid further consequences. We suggest that Sofian go on social networks. The success is dazzling with a number of subscribers flirting with 700,000 on TikTok et Instagram. The mother details: “His story touched people a lot. He appeared on the TPMP show to talk about his illness. Then, he had a role on television in the series “Toulouse-Lautrec” on TF1, always in the same spirit. 1^is May, he will be at the cinema with Artus in the film “Un p’tit truc en plus” and continues his evolution in this register.”

The comedian Artus, well known for his television performances as well as on internet platforms, noticed this. An unusual encounter for Sofian: “It was during a TikTok live. He cut off his live broadcast, because he liked me during this exchange. He invited me several times to his shows and we have had a very close relationship ever since. We We even got a “A little extra thing” tattoo together to mark the occasion!” Like the young man, carefree and dreamy despite his illness. A great life lesson.