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Medical Edge: DMD research, family asking for help

CINCINNATI (Liz Bonis) -- When you meet Mason Diersing, who is now three-years-old, it's hard not to notice  his spirit and spunk.

Mason's father, Kevin Diersing, said, "I see a lot of myself in him, always wanting to kick the soccer ball, throw the baseball; just always always being active."

That activity, however, may be tougher as Mason grows up.  A few months ago he was diagnosed with what's called, "DMD."

Dr. Brenda Wong, a neuromuscular specialist, said, "It stands for Duchenne Muscular Dystrophy.  It's the most common childhood muscular dystrophy."

DMD causes the muscles to shut down over time.  To his family that means...

"Play baseball, play soccer; those are things I think you can say okay we don't get to do that.  But not being able to feed himself, or go up steps or drive a car, things that everybody takes for granted.  To hear that at 16-years-old, for your son it will feel like a 15 pound weight to pick up a fork you think, shoot, how can that be," said Mason's mother, Katherine.

So now they are doing  everything they can to raise awareness of DMD.  But part of the reason they want to share his story isn't just so that you can learn more about this disease.  It is so that you can make a difference. They are fighting for some new research and there is a special petition online.

It simply asks you to urge the FDA to say yes to accelerated approval for safe, effective therapies for children with Duchenne.

Katherine said, "The petition was started by a grassroots organization,  It's a bunch of mothers who have known that there children have had this for many years."

You see right now most of the research has focused on the use of medications such as steroids for DMD.

But even Doctor Wong admits, "We want to see the day where there is a drug that is approved besides the current steroids that we are using just to slow the disease progression."

So the petition is a request to fast track some newer therapies which normally take a lot of approval time.  Mason's mom points out children such as Mason don't have a lot of time.

"Obviously when your involved in something like this, you jump in with both feet and your whole heart to make sure that these boys get the medication that they need," she said.

CLICK HERE to sign the petition for Mason!

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