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Cary Boy Refuses To Let Genetic Disease Control His Life

Posted Updated
Kevin Schaefer
RALEIGH, N.C. — Spinal muscular atrophy (SMA) is rare. One in 6,000 babies are born with it. Researchers have identified the gene that causes it, and now they are working to find a drug to treat or cure SMA. Until they do, families must deal with problems as they come.

Five years ago, 6-year-old Kevin Schaefer refused to let anything slow him down. Like most kids, Kevin was walking by the time he was 1. Shortly after, he was diagnosed with spinal muscular atrophy.

"The motor neurons at the base of the spinal column are dying because they don't receive the protein that they need," said Cindy Schaefer, Kevin's mother.

Now 11 years old, Kevin grew, putting greater stress on his body. His spine is collapsing and squeezing his lungs. He occasionally needs help breathing.

"When he does get sick, he gets pneumonia a couple of times a year," Cindy said.

Keeping up with Kevin's needs is costly. The Schaefers added a special bathroom to their home. Kevin needs a bigger motorized chair, and he is about to undergo spinal fusion surgery.

"They will implant rods in his back and then fuse the bone around it in order to correct it, the curve, because of his lack of muscle strength," Cindy said.

"I've heard from people who've been through it that the first week is pretty rough. But after that, it's OK. I mean it's worth it," Kevin said.

Kevin said he wants to get back to things he loves -- church activities, school and drama club. First, he wants to make the most of the rest of his summer.

"I'm very good at swimming. That's one of the things I like to do," he said.

Kevin had surgery last Friday. He said it was a rough week of recovery but he hopes to come home within the next few days. The WRAL Health Team will keep you posted on his progress.


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