Krabbe disease is a disorder that affects the central nervous system and reaches the brain at lightning speed. This orphan disease incurable affects one in 100,000 people and most often appears in the baby’s very first months of life. It is this disease that specialists at Roger Salengro Hospital in Lille finally diagnosed in little Ayden, 18 months old, when his young parents observed changes in his behavior. “He cried a lot, slept little and lost his appetite” they explain to the voice of the North.
At first, doctors fail to identify what the baby is suffering from. Its weight drops to 7 kg. He only sleeps 2 hours a day. And it is the diagnosis that falls like a cleaver: Ayden has a Krabbe-type leukodystrophy. A disease that affects only two babies in France. “The doctors told us they were sorry, but Ayden was doomed. The life expectancy is one or two years at most. The care given to her simply delays the effects and relieves it. “
But the baby’s parents refuse to give up hope. Research on the internet allowed them to discover in Quebec the existence of an alternative treatment consisting of a specific diet (the ketogenic diet), long series of exercises stimulating the nervous system and a hyperbaric chamber to regenerate cells faster. They therefore decide to open a support page on Facebook (called A ray of hope for Ayden) and a kitty to allow the little boy to benefit from this new treatment, to then hope for an enzymatic treatment by intravenous route, still in experimentation on the rodents.
Moved by this story, the inhabitants of the town mobilized and the pot swells quickly. The local media then nationals then take over and their appeal for generosity, at this end of the year period, is also bearing fruit: to date, the prize pool has almost reached 52,000 euros.
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