Artists supporting Gardoise Stéphanie, suffering from a rare and orphan disease, Chiari malformation

Une cagnotte en ligne a été créée pour aider Stéphanie Debray à payer son opération. Midi Libre – D.R.

Faced with this progressive disease, which causes violent headaches or paralysis of the hands, a charity concert with Ricoune, DJ Lucho or Alex Sax, is organized this Saturday, February 3 to help pay for an operation that can only be performed in Spain.

Stéphanie Debray is a 42-year-old young woman, mother of two children who lives in the village. She suffers from, and has been diagnosed with for several months, Chiari malformation, a rare and orphan disease.

Risk of paraplegia

It is a malformation of the cerebellum which consists of the descent of the cerebellar tonsils into the foramen magnum and which blocks the circulation of cerebrospinal fluid, causing very severe pain. "For my part, these are violent headaches with paralysis of the hands, neck pain. The disease is progressive and the pain more violent, the consequences will be the risk of paraplegia and the end of life in a wheelchair,” Stéphanie Debray explained last December.

Artists mobilized this Saturday

In France, an operation exists but is extremely risky and invasive. There is another which is only practiced at the Chiari Institute in Barcelona and for which Stéphanie learned that she was eligible. But the operation is very expensive (20,000 €) "and is not covered by CPAM or mutual insurance", specified the young woman.

An online prize pool has been created so that she can have the operation and this Saturday February 3, at space Paul-Maubon in Aubarne-Sainte-Anastasie, a free concert will be organized from 5 p.m. for the benefit of this operation with many artists with big hearts, mobilized for this cause: Alex Sax, DJ Lucho, Xavier Mateu winner of the New Star, Ricoune.

Refreshment bar and snacks on site.