Hope for Grace: Drug offers hope for girl given 2 years to live - KULR8.com | Montana's News Leader | Billings, MT

Hope for Grace: Drug offers hope for girl given 2 years to live

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BILLINGS, Mont. -

"Like any other kid she likes her cartoons she likes to watch, she likes to play. But I think her favorite things are definitely puzzles and books. She always wants to read books."

When your alarm goes off in the morning, chances are you get up maybe grab a cup of coffee, and get ready for your day.

Those simple tasks; lifting something, sitting up in bed; are all major achievements for Grace Talley. 

Grace suffers from Spinal Muscular Atrophy, a disease which limits or even causes a loss of muscle movements. 

"When we received her SMA diagnosis when she was little it as basically like receiving a death sentence for her," Grace's mom, Kalie Talley said. "We were told that she probably wouldn't even live so see the age of two. And here she's gonna be three in just a couple of months." 

Not only has Grace lived this long, she has also built muscle strength. 

"She's gained some really great strengths in her arms, her legs, her body, her head," Kalie said. "All the places that usually was pretty minimal movement, now she's starting to gain more and more." 

But how is this possible? Grace was the first patient in Montana to receive a treatment called SPINRAZA. 

Julie Parsons is a pediatric neurologist from Children’s Hospital Colorado. She explains,  "The treatment is not easy it's intrathecal which means that you have to do a lumbar puncture every time the drug is given,"

And now that Grace has finished her initial loading doses, she will have to receive treatments once every four months for the rest of her life. 

Kalie said this drug has been a miracle for Grace. 

"The injection more than anything has given us hope that she can do normal things," Kalie said. "You know, be as much of a normal kid that she can."

"To be able to have a treatment and to affect change in children who previously didn't have treatment is a miracle," Parsons said. "It's fantastic." 

The only problem is, because of the high cost, Kalie said she is battling her insurance to pay for the treatments. 

"As of right now we can't get any doses because our insurance has denied us so we're doing appeals."

On top of the treatments, Grace also visits the Cozy Nest Pediatric Clinic every week for physical therapy. 

Kalie said physical therapy isn't always easy because Grace can get frustrated, so they make each session like a game, pushing over blocks and playing music.

"Her and her therapist Shad have a really strong bond, she loves him," Kalie said. "She works harder for him than she does for us at home." 

Kalie said she hopes insurance companies make the treatment more readily available, not just for her, but for all the families struggling. 

"If they could just see the kids and see how happy they are to do simple things like reach for a toy, sit up on their own," Kalie said. "It's pretty hard to say no to a kid that just wants to move." 

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