St. Augustine father of son with Spinal Muscular Atrophy helps pass infant screening in Florida

St. Augustine, Fla. — Eli Campbell is a happy, energetic 3-year-old who has SMA, or Spinal Muscular Atrophy. He was diagnosed at 14 months. Eli’s father has become his biggest advocate, opening a local CureSMA chapter for families going through the same thing,

The rare genetic disease will soon be added to Florida’s newborn screening panel.

Screening for SMA passed this time last year and is expected to be implemented this spring.

The Campbell family says this new screening will save lives.

“He truly didn’t crawl. He army crawled and you could see his left leg was just dragging,” explains Eli’s mother, Maria Campbell.

Campbell noticed her son Eli wasn’t hitting important milestones nine months in. At first doctors told them not to worry. But five months later, Eli was diagnosed with SMA or Spinal Muscular Atrophy.

Eli’s father, Kevin says, “It was kind of a blow to our family to get the diagnosis. It was just overwhelming.”

“If you Google it, it’s awful. All you’re thinking is I only have two years with my kid,” explains Maria.

Scared to lose their first born, Eli immediately started treatment at Nemours in Orlando.

Campbell explains, “Early intervention with this disease is a must to guarantee, I would say, the full life expectancy and the least impact of the disease.”

Since starting treatment and undergoing two trials for gene therapy, at 3-years-old Eli’s regression has come to a halt.

“Right now he’s hitting those milestones minus the independent walking. He does walk and take steps with assistance now, so he use his gate trainers and walkers and adaptive braces.”

He’s able to go to Pre-K, play with his younger brother Liam and be a normal kid.

With Florida adding SMA to the newborn screening list, thanks to the help of the Campbell’s and so many others, there is hope for new families.

Maria exclaims, “We’re going to see a lot more families coming in and we want to let them know that, first, they’re not alone and, second, it’s not a death sentence anymore.”

Since Eli’s diagnosis, the Campbells have made it their mission to be advocates for SMA in Northeast Florida. They started a local chapter of CureSMA, which now has 15 to 20 local families in it. ​

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St. Augustine father of son with Spinal Muscular Atrophy helps pass infant screening in Florida St. Augustine father of son with Spinal Muscular Atrophy helps pass infant screening in Florida

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