Max McNary was born with Duchenne muscular dystrophy, a progressive genetic mutation that causes muscle weakness throughout the body, and eventually results in pulmonary and cardiac failure. Most people with the disease do not live longer than their mid-20s. So when Max started taking an experimental drug that caused him to make remarkable improvements, it was like the miracle for which his mother, Jenn McNary, had been waiting.
She says the drug, called Eteplirsen, has changed Max in ways she'd never imagined possible. She told Today: “It really is a miracle drug. This is something that nobody ever expected and he looks like an almost normal 11-year-old.”
Incredible, although along with that amazing joy comes a huge dose of heartbreak, as McNary's other son, Austin, 14 -- who suffers from the same disease -- isn't eligible for the drug.