Solidarity. Go beyond to raise awareness of Angelman syndrome<

By Méréva Balin Published the updated on 11 Jan 22 at 9:4878actu See my news

Nearly 3,000 enthusiasts meet every year on the last weekend of January for the Paris-Versailles-Mantes walk. Among the participants in the night hike this year, Cécile Tailleur and Claire Vasseur.

These two friends have launched this challenge to raise awareness of Angelman syndrome. A rare genetic disease which is affected by the son of Claire Vasseur, Mathis, like about 400 children in France.

The syndrome causes intellectual disability as well as motor, speech and behavioral disturbances. “The nights are short, in particular because of his epileptic disorders, but Mathis is a young man who is always smiling,” says Claire Vasseur.

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Admiring the journey of this mother who waited 13 years before seeing the doctors make a diagnosis on her son, Cécile Tailleur is committed to her side.

"I put my legs, my muscles, everything, at the service of the association," she explains. It's almost a habit for this Mantaise who has already participated in many sporting events in favor of the fight against cancer, for example.

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Reunited through social networks Supported by the French Association of Angelman Syndrome (AFSA), the two running enthusiasts met through social networks. They will see each other for the first time on the starting line.

However, this did not prevent them from organizing a first event last year, the AngelRun. "We raised 676 euros for the AFSA thanks to the support of unknown people who ran, walked or rolled wearing our solidarity bib", recalls, moved, Claire Vasseur. So many sports performances broadcast live and around the world on Instagram.

Between 8 and 10 hours of effort For the Paris-Versailles-Mantes walk, the two women will wear T-shirts in the colors of the AFSA.

A pot has also been posted. As the fateful date approaches, the stress mounts, especially on the side of Claire Vasseur. “It's a discovery for me, I'm not used to walking, she says. So I preferred to opt for the 39 kilometer route. »

For her part, Cécile Tailleur will cover the entire route for the third time. The cold, the darkness, the often capricious weather… She knows these conditions well which make this hike so special. “I would like to do better than last time by completing the circuit in 8 hours. It requires a strong mind but 54 kilometers is nothing compared to the course of Claire, Mathis and their family. »

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