Family struggling to afford expensive medical treatment for son
July 24, 2017 10:26 AM
ALBUQUERQUE, N.M. -- An Albuquerque couple is faced with a choice no family should ever have to make. They’re struggling to keep their 2-year-old son alive, and cannot afford a new treatment that may be able to save his life.
Two-year-old Luis was born with a disease called spinal muscular atrophy.
"It affects basically every muscle in the body," said Mariah Rascon, Luis’s mother.
SMA affects the motor nerve cells in his spinal cord. Luis has never been able to crawl, stand up, or walk. In February, he caught a cold. Luis is not strong enough to cough hard enough to clear his lungs.
"Doctors told us that he would probably have to pass away because he was struggling to breathe," Rascon said.
Luis survived, but his parents say he's been getting weaker.
"That's why we want Spinraza because we're kind of just watching him go away little by little," said Rascon.
In December, the FDA approved a treatment called Spinraza. The problem is doctors in Denver have told Luis’s parents that when you combine the cost of Spinraza with the services provided at the hospital, each injection will cost them $200,000. Luis would need injections once every two weeks for two months, then once every four months for the rest of his life.
His parents say they'd be happy with just one injection for now, because they’ve seen results from kids who have had it.
"These kids are gaining so much strength from it,” Rascon said. “Some kids can walk, some kids can crawl."
For them, even seeing Luis stand up would be worth all the money and battles with insurance companies.
"Last winter was bad for us,” said Rascon. “The doctors keep telling us to prepare ourselves for this winter, and it's something you can never really prepare yourself for."
Here is a link to a GoFundMe page to help the family: https://www.gofundme.com/2dwty04
For more information on SMA, click here: https://www.mda.org/disease/spinal-muscular-atrophy
Updated: July 24, 2017 10:26 AM
Created: July 21, 2017 06:33 PM
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