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Wyoming County boy in need of research for rare condition

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BECKLEY, WVa. (WVVA) In a sea of students at Pineville Elementary School, little Seth Steele stands out.

The seven-year-old may have a little trouble walking, but it's that smile that grabs you from the moment you meet him.

"When I take him to school, every kid that passes says hi to him. He has so many friends. He loves going to school," said Steele's father Kevin Steele.

Steele doesn't let the fact that he has trouble walking stop him. If he can't dunk the basketball, he has his mother Jessica Stacy raise him up. She said he also has the uncanny ability to make the room laugh with a good joke.

"If you're having a bad day, he brightens it. He's just wonderful all the way around," said Stacy.

When Seth was nine months old, his parents thought something might be wrong. Their son was having trouble walking.

"He hit all the milestones, then around nine months, we started working on walking and it never really happened. So after his first birthday, we went looking for answers," explained Steele.

Three years and dozens of hospital visits later, Seth got an answer. A chromosone panel showed Seth suffers from H-ABC Leukodystrophy, a rare brain disease that affects Seth's motors skills, among other things.

Without a treatment or cure, doctors said the disorder can continue to attack Seth's brain.

"I was shattered," said Stacy upon learning the news. "Devastated."

As he forges on with life, his parents said he has let none of this stop him, not one bit.

He takes each day with more life than the next. "He just does. He doesn't let anything get to him," said Steele.

As the clock keeps ticking, though, Seth's family is hoping for a lot more time. Steele said a research team at the Children's Hospital of Philadelphia (CHOP) could be close to a treatment.

"When it starts progressing, with the other children, it's rapid, there's not a whole lot of time," said Stacy.

The treatment could buy more time for a little boy who shows the world what it means to live.

"He's the thing that reminds us all of that light in life....that smile. So many of us, we live to see our children health and happy," said Steele.

To contribute to research for a treatment for Seth's condition, visit

Those making a donation can click on the scroll down button to select 'research' or 'children's fund - greatest need.'

Annie Moore

Multimedia Journalist

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