I am my Mom’s little Gaëtan! When I was born, I found myself in a wonderful world, but I am prevented from knowing the best of it because of a rare disease called ATR-X. In my disease, I lack 2 amino acids: glycine and arginine which have changed everything in my life.
While for other children walking, grasping toys and speaking are natural, I have to struggle every day of my life without experiencing the carelessness of childhood. The world belongs to everyone but the reality is quite different. If I don’t walk and talk, I don’t have the right to the same education as a healthy child.
I like music, the swimming pool, building legos, bouncing on a ball or a trampoline and the color of the wind. I hate the cold and viruses.
Many diseases are experiencing improvements such as diabetes, AIDS or covid 19. I am fighting alone against windmills and I hope with all my might that a researcher will take up the challenge of finding a treatment.
Studying my case is a great step forward for science, doing nothing is dooming me so let’s join forces in helping me keep my wonderful smile.