TESTIMONIAL - Rare diseases: "I do not want to see my son die because of profitability" - France Bleu

While the Telethon begins this Friday, a hundred people have to meet in front of the Robert Debré hospital in Paris to request the maintenance of a follow-up of patients suffering from a rare disease. Frédéric Maignan will be among the protesters.

The life of this Costarmicanican falls in 2013 when he learns that his son, Paul, at age 7, suffers from the ataxia of Friedrich, a rare and incurable disease. "It was the teacher who alerted us, our son constantly clashed with tables and chairs in the classroom". This neurodegenerative disease progressively deprives the patient of most of his faculties. Only his intellectual abilities are not achieved. "Life expectancy is between 30 and 40 years".

Every six months, Frédéric Maignan takes his son to the Robert Debré Hospital in Paris, where specialists have followed a group of patients suffering from the same illness for several years. A unique monitoring in the world that could be interrupted at the end of the year.

For reasons of profitability, the public hospital decided to stop the financing of the service.

"It is extremely shocking to see that our children no longer have the necessary care because they are a very small part of the population affected by this disease".

An American laboratory in the ranks

The follow-up set up at the Robert Debré hospital, however, helped collect valuable data on the disease affecting researchers across the Atlantic! "An American laboratory offers half a million dollars to access this data and start testing patients within two years." If the sequel stops, the Americans' proposal will fall apart.

Frederic Maignan's son, who is now 13, has "a lot of problems accepting his illness" which makes it more and more staggering on the way to high school …

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