Ayden suffers from a rare disease. To allow him to test an innovative therapy in the United States, his parents launched an appeal for donations.
He is only two years old and already, so much trouble. Ayden knows hospitals too well, nasal probes and exams, each more intrusive than the next. This two-year-old infant suffers from a very rare and incurable disease, Krabbe’s disease (1 in 150,000 births in France), which is characterized by damage to the central and peripheral nervous system. Ayden gradually lost his motor skills. His doctors gave him two years of life expectancy.
Hopes and fears
This was without counting the pugnacity of his parents, who learned of another case of Krabbe disease in a Canadian baby, Louis. The treatment undergone by the latter gave very promising results; a first fundraising campaign was carried out in December 2015 for Ayden, in order to finance this same care, consisting of a specific diet, a hyperbaric chamber and rehabilitation.
“Thanks to this protocol, Louis was able to find many faculties lost before, writes the family, on the page Facebook Support. However, Louis died following a respiratory problem, a tragic consequence of the last stage of the disease ”. Little Ayden, meanwhile, showed unexpected progress – his condition was only supposed to get worse. However, her parents know that this may not be enough.
Emergency
On their page, Ayden’s parents explain that a clinical trial will start in the United States. “There was research done on mice, which gave very good results. The disease has been stopped ”. The test consists of an umbilical cord blood transplant which would allow, if it works, the remyelination of the nervous system destroyed by the disease.
“The first estimate amounts to a million dollars”, further specify the parents. To the Northern voice, they explain that the bill was increased because the neurologist of the little boy refused to register him for the trial, considering him too weak, in palliative care. Faced with the obvious improvement in Ayden’s condition, the US team agreed to include it in the trial, but with doubled costs.
Ayden’s parents have an appointment in the first quarter of 2017 in the United States. They must collect the funds by then and therefore call for solidarity. “It is absolutely necessary that I take my son to the USA, if he were to die without this treatment, I would be remiss all my life, I could not get up! », Explains the mother, who insists on another point: if this treatment works for Ayden, then, opens the hope of a cure for all the other children reached of this orphan disease. To donate funds to Ayden’s family, it’s here !
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