Disease Sanfilippo : these parents are trying to raise 4 million euros to save their children

Maladie de Sanfilippo  : ces parents tentent de collecter 4 millions d’euros pour sauver leurs enfants

4 million euros. This is the sum that must meet Alicia and Julien Mercier, to save their two children, affected by a degenerative disease rare.

Maladie de Sanfilippo  : ces parents tentent de collecter 4 millions d’euros pour sauver leurs enfantsA grand-father, 98-year-old patient, becomes a star of the networks sociauxRéseaux social : I control my imageComment protect our teens networks sociauxLes social networks make me unlock !They have left the social networks to relive again !

The parents from the Val d’oise call for mobilization to save their two children. Hugo and Emma, aged two and a half years and ten months, suffering from the disease Sanfilippo type B. It is a degenerative disease that destroys the brain and which gives little hope of life. Their father and their mother, when interviewed by France Bleu, said that a clinical trial was likely to halt the progression of the disease.

The condition ? Meet 4 million euros. To harvest this amount, parents are increasing the calls for donations. They have created a page on Facebook, as well as a jackpot prize online. For the moment, they have raised over a million euros.

Hugo has not yet 3 years old, and his little sister Emma was only 9 months.They are suffering from the disease of SANFILIPPO,…

Posted by Hugo and Emma, a fight for life on Thursday, July 12, 2018

A life expectancy is very limited

Both diagnostics have been installed four months ago. The disease, rare and genetic in origin, is the consequence of the absence of an enzyme. The cells in the brain are gradually deteriorated. “There are two births per year from this disease, with a life expectancy is very limited which will in the order of ten to fifteen years maximum,” explains the father of two children, Julien Mercier. “It is important to know that with the disease our children will not speak, they do not know how to count, they do not know how to say ‘I love you'”, says their mother, Alicia Mercier.

The clinical trial has already been successfully tested five years ago on other small. It consists of injecting into the brain of a patient with the DNA of the missing enzyme. “This sum of 4 million euros has been calculated with the help of the Pasteur Institute, says professor Marc Tardieu, interviewed, who has set up the first clinical trial. It corresponds to the phases 1 and 2 of the trial.” , he said to the Parisien. The specialist says it is “ready” to trigger the test, if the funds are gathered.

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Estelle Priam

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