Luna received life-saving treatment costing millions of dollars for just one infusion.
SAN ANTONIO — Genetics often plays a role in the diseases or conditions a child may be born with. Now we’re reporting on a disease that, while it has no cure, can be fought if caught early.
Spinal muscular atrophy, or SMA, is a genetic neurodegenerative disorder that about one in every 6,000 babies are born with, according to Johns Hopkins. It causes young children to lose the ability to move their body, talk, breathe and even swallow.
The condition is similar to Lou Gehrig’s Disease or ALS, but there are treatments available.
“Somebody who has the same diagnosis as Luna, the life expectancy is two years,” said Monica Pozos, referring to her 13-month-old daughter.
Luna was born April 2, 2024. Days later, just before the total solar eclipse, they found out their daughter had SMA.
Her father Mario had also just been laid off from his job.
“It wasn’t until much later that I stopped and thought about it and then realized, ‘Yes, there was a literal shadow over us,” Mario Pozos said. “But the sun came back out. Life returned to the world at that point.”
Dr. Melissa Svoboda, chief of pediatric neurology and neurodevelopment at Baylor College of Medicine with Christus Children’s Hospital, said higher-risk pregnant women could undergo more genetic testing, which can detect SMA.
“We can get children treated within the first week of life,” she said. “That’s a pretty rapid treatment for a disease that does take a little bit longer to degenerate.”
The treatment Luna needed cost $2.2 million for just one round of IV gene therapy called Zolgensma.
Thankfully, her parents were able to get insurance to cover this one-time infusion with the help of Christus Children’s.
“Without the support of both our providers and our family, we would have not been able to get her that treatment as early as we did,” Monica Pozos said.
Now, Luna is a much healthier, happier toddler. And these first-time parents are much more at ease.
“We’re doing our jobs as parents,” they said, “which is to keep Luna happy and help her become the best person she can be.”