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

Sofian Ribes? smiling and optimistic? to face the rare disease of Ataxia Telangiectasia. ML – Rémy Rugiero

The Biterrois resident, Sofian Ribes, suffering from ataxia-telangiectasia, will be in the spotlight with his participation in the film 'A little thing in more', directed by his friend Artus , and which is scheduled for release on May 1st. An opportunity to make his syndrome known. And to have a laugh. Meeting. 

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" for& ;nbsp;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 as my muscles are also affected. I also live with a prosthetic eye because I had cancer there."

A daily struggle

Eager to raise awareness of this disease and raise funds with his association, the boy is active in the idea of ​​raising awareness as much as possible the public, all with the constraint 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: "C&#39 ;is a neurological reprogramming system. Our physiotherapist, Guillaume Peyre, was able to export the concept to Béziers. All this remains free, the deal being just to make this initiative known."An exchange of good practices to fight against the disease and give ourselves 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. His mother organized several events, such as lotteries, initially to finance the care. Then the cancer (now defeated) arrives and interrupts the expensive treatment, forcing the family to review 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 and 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. On May 1st, he will be at the cinema with Artus in the film 'A Little Thing in Plus'. and continues its evolution in this register."

Sofian Ribes and Artus accomplices during a meeting. ML – Rémy Rugiero

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 really liked me during this exchange. He invited me several times to his shows and we have had a very close relationship ever since. We even got a tattoo together "A little something extra” to mark the occasion!" Like the young man, carefree and dreamy despite his illness. A beautiful life lesson.