Living with neurofibromatosis: a daily challenge

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Patricia Hélie

Wednesday, 19 July 2017 17:40

UPDATE
Wednesday, 19 July 2017 17:40

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Donovan is 9 years old and he is a real box of surprises. Suffering from neurofibromatosis, it is covered with brownish spots and begins to also have neurofibromas, a sort of small bumps under the skin. And his mother never knows what tomorrow will be made.

“He has a muscle weakness, difficulty with language, it catches every virus imaginable”, she entrusted. His son adds: “I have problems with running, cutting, drawing.”

Donavan loves his spots. But since he has attended a day camp, the question for him to remove his shirt at the pool. “If there was more teasing, it would be freedom,” a-t-said.

Neurofibromatosis is a genetic disease non-contagious which affects the skin, nervous system and bones.

Audrey Beauchesne is also reached. “In the life of every day, cut the chicken or bread, I am not able. I am 21 years old and I need help to cut my meat.”

If the disease is unrecognized in the population, it appears to be also of the medical corps. “I was told that it was all in my head! I was too young to have evil to the bone like that.”

As for Donovan, he hopes to one day become a master Ninja, perhaps precisely in order to put the illness out of combat.