Nashwauk boy has brighter future thanks to life-changing drug - KBJR 6 Your Weather Authority: News, Weather & Sports

Nashwauk boy has brighter future thanks to life-changing drug

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NASHWAUK, MN -

A Nashwauk boy's life is taking a completely different turn, thanks to a life-saving drug recently approved by the Food and Drug Administration. 

Reed Reuter, 3, has spinal muscular atrophy, or SMA. It's a progressive, genetic disease which causes a person to lose the motor nerve cells in their spinal cord, causing their muscles to weaken over time. 

The muscle loss is debilitating and often fatal.

But just before Christmas last year, the Reuters got the news they'd been hoping for: The FDA fast-tracked the approval of a drug which would treat SMA. It's called Spinraza, and it's now the first and only FDA-approved drug to treat the disease.

Reed got his first injection in April.

"He started gaining new skills and abilities within weeks of his first injection," said Reed's mom, Brittany Reuter. 

The drug didn't come a minute too soon. At the time, the Reuters were just starting to notice a decline in Reed's strength, which would likely only get worse as time went on.

"This spring, before receiving injections, he wasn't able to sit on [his four wheeler] very long," Brittany said, "He'd fallen off because he didn't have the strength, and that was kind of the first moment that we're like, 'he's getting weaker.'" 

Spinraza is injected into the spine, increasing the proteins needed for a person's motor function. The drug essentially hits the pause button on the disease's progression, stopping a person's muscles from getting weaker. If the drug is given at a young age, before a person loses too much muscle, it can mean a very different kind of life.

Reed will get injections every three months for the rest of his life. 


"Potentially, he could walk, and without treatment, that was not possible," said Brittany of Reed's outlook now that he's getting Spinraza, "[Reed] asks me, 'Did I never do that before, Mom? Is this new? Did I do that before Spinraza?' And I get to tell him all the time, 'That is new.'"

Spinraza comes with a steep cost. The company which sells it has said one dose costs $125,000. They say they've based that price on cost to the health care system and clinical value. 


Reed got into a special program in which the drug company covers the cost. A benefit was also held in September to raise money for a van, making it easier for him to be transported in his wheelchair. If you'd like to help the Reuters, there's a Go Fund Me page set up here

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