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“Mom’s heartache: Two sons have deadly disease, but only one can get ‘miracle drug’


Each day brings Jenn McNary another dose of hope and heartache as she watches one son get healthier while the other becomes sicker.

Both of McNary’s sons were born with Duchenne muscular dystrophy. Max, 11, is receiving an experimental therapy that appears to be making him better, while 14-year-old Austin is slowly dying.

Austin was too sick to be included in the clinical trials for a promising new drug called Eteplirsen. “He can’t get into a chair, out of his wheelchair, into his bed and onto the toilet,” McNary told NBC’s Janet Shamlian.

Max, however, was exactly what researchers were looking for. He was put on Eteplirsen, and now he’s back to running around, climbing stairs and even playing soccer.

“It’s a miracle,” McNary said. “It really is a miracle drug. This is something that nobody ever expected and he looks like an almost normal 11-year-old.”

Eteplirsen is designed to partially repair one of the common genetic mutations that causes DMD. Even a partial repair may enough to improve life for boys struck by the condition, which results from a defect in the dystrophin gene.


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