Near Chartres, help Camille suffering from a rare orphan disease which has three cases in France

This Eure-et-Loir association is counting on the solidarity of the inhabitants, with this solidarity action organized next week, Saturday June 11, 2022, at the pond of Leves (Eure-et-Loir). With the proceeds from this walk, the girl’s parents could finance, in part, a vehicle adapted for their 7-year-old girl, suffering from a rare orphan disease.

Only three cases in France and twenty in Europe

Camille was born in Chartres in January 2015, arriving ten minutes ahead of her twin brother, Paul. A few months after the birth of their two children, the parents notice that their daughter is making less progress than her brother, the doctors draw up the diagnosis: Camille is suffering from an orphan disease. Six years later, a name is placed on it, it is a rare non-progressive disease, “SPATA 5”.

There are three cases in France, twenty in Europe and about three hundred all over the world. Aged 7 today, the girl “does not speak, does not walk, does not grab objects because of her psychomotor retardation”, indicates the association Camilla’s smilecreated in 2018 by his aunt.

A family that never complains

Camille’s illness requires special care and above all appropriate equipment to make life easier for her and her parents. This is why her family is mobilizing to raise funds to support Camille and her parents.

It’s a family that commands admiration, that never complains, but we know that their daily life is not easy.

Appeal to local solidarity

Two routes will be proposed for the solidarity march of the June 11 in Leves. A first wave of participants will leave at 10 a.m. for 7 kilometers and the second at 10:45 a.m. for 3.5 kilometers. The solidarity march will begin after the Fondation d’Aligre, at the lake, rue Josaphat. The participation is free and a snack is offered on arrival.

“The idea is to appeal to local solidarity to help parents equip their vehicle, because Camille grows up, needs change with his age, the wheelchair having more and more difficulty to pass”, indicate the organizers of this action coordinated by Christelle Gagnat, a close friend of the family.

Practice. All information about the walk ici. To donate, click to be.

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