St. Augustine boy with Spinal Muscular Atrophy participates in clinical trial

New Drug Could be a Breakthrough for Families

St. Augustine, FL. — A new at-home treatment is now approved by the FDA to help the thousands of children suffering from what was previously thought of as a death sentence.

Eli Campbell was diagnosed with Spinal Muscular Atrophy (SMA) at just a year old.

His parents found out that his life expectancy could be just 18 months.

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So, they decided to take a risk to save their boy.

“We weighed all the pros and cons,” Maria Campbell said. “Truly the pros outweigh the cons when it came to this particular trial so that’s why we’re like we’re doing it.”

Eli got involved in the clinical trials for a drug called Evrysdi.

It’s an at-home dosing treatment.

You can learn more about the drug here.

Action News Jax first spoke with Eli’s parents, Maria and Kevin, back in February after Eli had undergone two trials for the gene therapy.

“Eli has been making a lot of progress taking this medication,” Kevin Campbell said. “We’ve seen a lot of improvements.”

The drug now has FDA approval.

While, SMA is rare, it can impact children if their parents are unknowingly carriers.

If both parents carry the gene, their child has a 1 in 4 chance of getting the disease.

However, this drug gives hope to any families who find themselves in the same position as the Campbells.

“The sacrifices these kids and adults made allowing companies to do research on their bodies it’s pretty monumental,” Kevin Campbell said.