FDA approves first medication for Duchenne Muscular Dystrophy
JACKSON, MO (KFVS) - The Trovillion family said their son was one of 12 boys involved in a drug trial for the first-ever medication to hit the market for Duchenne Muscular Dystrophy.
It has been a long battle for families who've been hoping to see it hit the market for a while.
On Monday, September 20, 2016 the FDA approved the first drug to treat patients with Duchenne Muscular Dystrophy.
"Duchenne's Muscular Dystrophy occurs in about one out of every 3,600 male infants worldwide," according to the FDA.
"Mostly I just like to watch sports," Jackson High School sophomore Justin Trovillion said.
Like any teenage boy, Justin Trovillion has big plans for his future, he wants to be a sports broadcaster and is looking forward to going to the University of Missouri. He currently has a Facebook page he manages devoted to his school's sports reports called Jackson Indian Sports with Justin.
"Sports is pretty much what I do," he said.
At three years old he was diagnosed with Duchenne Muscular Dystrophy. A rare genetic disorder which results in progressive muscle deterioration.
"When Justin was first diagnosed we signed up for everything, whatever trial was out there we will do it, we will go overseas whatever it takes," Justin's mother Carrie Trovillion said.
What it took, was a phone call.
"I got a phone call from Nationwide Children's Hospital in Columbus, Ohio," Trovillion said. "They said we want you in Columbus, Ohio Monday morning at 8 o'clock."
That's when her son joined a trial group of boys for a drug called Eteplirsen.
"We called those twelve boys in the trial the 'Columbus twelve' and we were from all over the country from New York, Vermont all the way over to Los Angeles," Trovillion said. "So once a week for 11 months we flew to Columbus, Ohio to have treatment, the three of us."
The treatment totaled five years and a lot of travel time.
"Justin hasn't been to school on a Monday in five years, we've missed a lot of Mondays going for the trial drug so for 11 months and a week we went to Columbus, Ohio and then now since then the last four or so years we travel to St. Louis Children's Hospital every Monday for infusion."
It was a difficult journey, but now that the FDA has approved the drug that Justin helped to test, his mother said other kids will now have a better future, just like Justin.
"He's gonna drive, he's gonna go to college, and he's gonna be successful we had no idea without this medicine," Trovillion said.
Eteplirsen isn't a magic cure for Duchenne Muscular Dystrophy and Trovillion said the medication costs $300,000.
Trovillion said the drug only helps 13 percent of kids affected by the disease, but she said it's a step in the right direction.
On October 29, 2016 at 10 a.m. MDA will host a walk at SIU Lake Pavilion in Carbondale.
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