Toddler with spinal muscular atrophy showing signs of improvement | KOB 4

Toddler with spinal muscular atrophy showing signs of improvement

Morgan Aguilar
November 06, 2017 06:23 PM

ALBUQUERQUE, N.M. -- A couple has learned not to take anything their son does for granted. Luis will turn 3 years old in January but he has never crawled, stood up, or walked.


He has spinal muscular atrophy. In July, the family said they were trying to get their insurance to cover Spinraza, an injection that some families had seen positive results with. The problem is that Spinraza costs tens of thousands of dollars per injection and Luis needed four every two weeks, then one every four months for the rest of his life.

But several months ago, the family learned their insurance agreed to cover the first four injections.

"It was exciting but at the same time scary," said Mariah Rascon, Luis’ mother. "When the day came it was super scary."

His parents say Luis experienced some back pain and nausea after the first injection. They didn’t notice much of a change in his mobility until after the second dose.

"It's exciting to see him lift his legs," Rascon said.

For the first time, his parents are seeing Luis hold his legs up on his own.  His father, Louie Aguilar Jr., said he knows his son is smart and happy, and tries not to let his mind wander to the negative.

"It's something that you want your son or daughter to be doing is running around, or you chase them or, you know, playing sports and things like that," he said. "But it's something I try not to think of but it does cross my mind."

The family was going to have to go to Denver for each injection, but three months ago a doctor started working at UNMH. It means they don’t have to drive seven hours every two weeks.

Luis has his third injection on Thursday. After the fourth, they will have to re-apply to try to get doses covered every four months. But for now, they say they're enjoying every moment and every sign of progress.

"I can't wait to see what the next two [injections] hold for him," Rascon said.


Morgan Aguilar

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