My name is Emily Thompson, and I never thought I'd be here writing this, begging strangers to help me keep my son alive. Matheus was born with Centronuclear Myopathy, a rare disease that's destroying his muscles, slowly taking away his ability to move… and to breathe.
He can't walk. He can't sit. He can't speak. There's a hole in his throat — a tracheostomy — that keeps him alive. I have to clean it every day, and when I do, he cries in silence. His face twists from the pain, but no sound comes out. He's only 4 years old. He's never said "mom." But when I talk to him, he blinks. He still fights inside. He hasn't given up.
Every day is a battle. I stretch his legs so they don't freeze in place. I suction his throat so he doesn't choke on his own saliva. I feed him through a tube. I sleep beside machines that keep him alive — because if one alarm goes off and I don't hear it, I could lose him in seconds.
Doctors told me to prepare for the worst. They said there's no cure. But I won't give up. I can't. Matheus needs a cough-assist machine, therapy equipment, special nutrition, and medical transport. And we're out of money. I've sold everything we had.
