GRAND RAPIDS, Mich. (WOOD) — The U.S. Food and Drug Administration recently approved treatment to help those who suffer from a fatal disorder.
Thursday, 24 Hour News 8 met one of the few patients in West Michigan to receive the injection to treat spinal muscular atrophy.
The disorder affects muscular functions and is the leading genetic cause of death of infants and toddlers, according to the SMA Trust.
But Malorie Fox has defied medical odds and is now 14. She was just 10 months old when her parents got the news.
“They gave us pretty little hope. They just said that there was no treatment, there’s no cure for spinal muscular atrophy and she most likely would not live to be two,” her mother Michelle Fox said.
Malorie Fox, of Cascade Township, now has a chance to keep her strength and stop the deterioration of her muscles.
24 Hour News 8 asked her doctor, Pediatric Neurologist Jena Krueger at Helen DeVos Children’s Hospital whether she was surprised by Malorie Fox’s outlook.
“I think SMA is such a wide range that every kid surprises me in what they can do,” Krueger said.
The drug is called Spirinza, which was approved by the FDA in December 2016. It’s designed to make certain proteins in the spinal fluid to stabilize a patient’s muscle function. It’s not cheap, the average cost for a year’s worth of treatment is $750,000.
“I’m nervous about the pain because I don’t really do well with pain and then I’m kind of excited to see what happens,” Malorie Fox said.
But after their insurance company denied coverage twice, the drug company is giving Malorie Fox the drug for free.
“It is $125,000 per dose. They group up the doses in the beginning to get it kind of loaded into system and then it’s every four months after that,” Krueger said.
Malorie Fox receives her first injection Friday. The process is similar to that of a spinal tap. She will be the third child in West Michigan to receive the treatment.