come and have brunch to help Sabira, who suffers from Charcot’s disease

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Aged 19, Sabira Levet suffers from Charcot – Marie Tooth disease, a neuromuscular genetic disease which handicaps her on a daily basis.

In order to allow the purchase of various amenities to relieve her, such as furniture or school supplies, her mother Edwige created a year ago an association called “A helping hand for Sabira”.

With all their will and energy, the two women try to make it known by organizing different manifestations like sales of chocolates, pansies on the Baud market in Morbihan, or even a fall brunch which will take place on November 17.

“It is a very complicated disease because it has many different forms and the progression is not the same for everyone. »

That day, at the Idée Halle, sweet and savory treats will fill the buffet to satisfy all appetites.

Lack of treatment

The disease mainly affects the peripheral limbs, Sabira has difficulty walkingwhich are not getting better. Walking less and less, and less and less far, Sabira must also refrain from running, because of the fatigue it causes her.

“What is most problematic is its lack of sensation in the feet and hands. She doesn’t feel textures, but neither does she feel hot or cold. Fortunately, she has managed to find tips over the years to avoid putting herself in danger. It is a very complicated illness because it has many different forms and the evolution is not the same for everyone. There is no treatment at the moment but luckily Sabira has type CMT 1A, the most common, so research is focusing on it,” confides her mother Edwige.

“I would like to write novels in English”

Far from letting herself be defeated, Sabira tries to build her life as best she can and is currently in the second year of a degree in foreign languages.

“I would like to write novels in English, I have much more inspiration in this language” specifies Sabira.

Also suffering from severe scoliosis, Sabira had to live with a corset 20 hours a day for 6 yearsonly taking it off for the shower. Even though she can now do without it, her illness remains very tiring.

“But it can improve with equipment like special pens or a sit/stand table that you wish you could buy. As she sits all day at university, she could work standing up in the evening,” hopes Edwige.

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