Lakeshore family fights for treatment for son's rare muscle disease

Posted at 6:14 PM, Apr 06, 2017
and last updated 2017-04-06 23:45:02-04

A Manitowoc family is growing more and more worried every day that their insurance company will stop paying for life-saving treatment for their son.

15-year-old Devin Argall is fighting a rare degenerative disorder known as Duchenne Muscular Dystrophy.

Duchenne Muscular Dystrophy causes a person's muscles to degenerate and weaken, leaving many teens wheelchair bound.

However, for Argall those signs of degeneration are hardly visible.  His father credits a new drug called Exondys 51 for his son's positive reaction.

Devin is participating in a drug trial for the treatment, which the FDA approved back in September.  The agency accelerated the approval process because the drug showed positive results.

Concerns are growing for the Argalls though.  They're worried the drug may no longer be covered by insurance, as it's increasingly becoming listed as an "investigational" or "experimental" drug by some insurance companies. 

"There is no doubt that this medicine works.  There's no doubt and to deny him the coverage, it would be heartbreaking," said Devin's father, Josh Argall.

Currently Devin's treatment is covered by insurance, but there's no guarantee it could stay that way.

People with Duchene's typically have a life expectancy in their early twenties.  
Currently Devin is able to walk and play with his friends on his own.  He even runs his own website to raise money for the Muscular Dystrophy Association.  If you would like to donate click here.