I grew up right in the middle of a Duchenne family. My two cousins had it at the time as well as my brother, my best friend. Early on all I knew was that my brother could not walk, little did I know that was the very least of it. Duchenne slowly and brutally made me an only child at 15. Duchenne made it so my brother could not run, skate, walk, or play with other kids. Duchenne made my brother feel lonely, depressed, and unloved. Duchenne took my brothers ability to breathe on his own, it robbed hi. Of the ability to hug, to what without a tube. Finally it took my brothers life due to heart failure.
Throughout his short 18 years, Duchenne sent him to the hospital countless times. He had 13 surgeries, long and painful recoveries, and way too many memories in a hospital bed. 25 years later...after finally becoming somewhat normal after my brothers passing. Duchenne rears it's ugly head at me once more. My son, who is two years old, also has a deletion if exon 45, Duchenne muscular dystrophy. Do you have any idea how it feels for someone to tell you your son will die young? That there is no treatment or cure? Everyday is lived in fear, fear that today will be the last day I hold my son, fear that I will die along with him when the time comes.
Please help us find hope. These children need treatment and a cure.