Will lives with MD, hopes to get a new drug and still dreams of being a firefighter someday

Heather Crawford reports. 9/20/2016

"I'm in 4th grade now and I'm so excited they finally found the medicine."

That's Will Barkoskie. He's 9. He started the 4th grade about a month about, and he lives with Muscular Dystrophy. 

The medicine that he's referencing is news he and have his family have been waiting and praying to hear.

"Yesterday was just fantastic news for us because it's been a long way getting here," says Blake Barkoskie, Will's mom. "But yesterday the drug Eteplirsen was approved by the FDA, which is a landmark. It's the first treatment available for our boys with Duchennes."

The drug, which is injectable, is manufactured by Sarepta and comes at a steep cost - about $300,00 for a year for the average patient. 

For Will and his family the next big hurdle is getting insurance to approve it. 

"He's lost the ability to walk since the trial started," Blake says. "And now we're getting weaker and weaker in our arms and his fingers so he has a scribe at school - he doesn't really write much."

For Blake and Will's family, it's important to them to preserve that last little bit - and increasing it somewhat. 

"More than anything else it's a hope," she says. "It's a beginning."

While Will's doctors and family work to get him the newly approved drug, Will is still optimistic. And he continues to inspire those around him.

"He just radiates positivity and just has a great sense of humor and just takes it all in stride," Blake says.

Will's not giving up on his dream, either.

"It means that I can be strong," Will says. "I might still be in this chair. Hopefully I can still be a firefighter when I grow up."


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