“My name is Anthony, I live with Ondine Syndrome. I lived with a tracheostomy for 10 years. Today, I am broken down with a mask. I totally stop breathing as soon as I fall asleep, so I have to immediately connect to my respirator. I also need it in case of fatigue, stress, fever and also if I have to concentrate for a long time. I can not practice all the sports I would like but I try to do as much as possible as soon as my health allows it: cycling, skiing, swimming. But, I get tired quickly. I have a dream that doctors will heal me someday. Later, I would like to be a movie actor in action movies! “
Several teams in different countries are working to find a cure for this rare disease that affects only 1200 people worldwide.