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5K race to benefit 'little heroes' fighting neurofibromatosis
Mother of Robert Owenby founded race to raise funds, awareness
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Children participate in the "heroes lap" at the 2015 Little Heroes 5K, benefiting Children's Tumor Foundation.

Little Heroes 5K

When: 1:30 p.m. Feb. 21

Where: American Legion, 2343 Riverside Drive, Gainesville

Price: $25

More info: www.active.com or www.runsignup.com

What makes a hero?

One might say a hero is courageous. A hero is a person who has overcome adversity to achieve something great. A hero is a person who fights a tough battle, and a hero is someone who wins.

Six-year-old Robert Owenby is a little hero.

Owenby was diagnosed with neurofibromatosis at 2 years old. The genetic disorder affects one in 3,000 children, causing tumors to grow on nerve endings throughout the body.

It is more common than muscular dystrophy, Huntington’s disease and cystic fibrosis, though many have never heard of it.

“Robert was about 8 months old when we noticed some puffiness behind his right eye,” said Robert’s father, Wesley Owenby. “We thought it might be some sinus problems, but the doctor said, ‘Well, let’s get an MRI just in case.’

“A few days later we get the dreaded call that says, ‘Hey, we found something.’”

Wesley Owenby said it took years for an accurate diagnosis to be made. In his six years, Robert’s had 16 MRIs, three surgeries and a possible fourth on the way.

“But he’s doing great,” Wesley Owenby said. “There are a lot of kids with NF who are worse off than Robert.”

Four years ago, when Robert was diagnosed, his mother, Carolanne Owenby, had an idea for a way to help him and children like him.

“I thought, ‘I love to run, so why don’t I try to find something that I can do that’s positive while we’re here?’” she said.

Their family, including Robert and his sister Kinley, had moved to Philadelphia for treatment. There, Carolanne Owenby joined a racing team benefiting the Children’s Tumor Foundation.

“Little did I know, that would become about 85 percent of my life,” she said.

The Owenbys, along with family friend Tara Rogers, started Little Heroes of North Georgia, LLC, which has raised more than $100,000 in four years for the foundation. Robert is not the only child in Hall County diagnosed with neurofibromatosis. Anna Lee Weber, 13, is now tumor-free after a childhood battle with the disease, and 4-year-old Sean Robertson was diagnosed three years ago.

This year, the organization designed specifically to fundraise for an NF cure will host its annual Little Heroes 5K with a new campaign: “I know a fighter.”

“These kids have to fight a lot earlier than they ever should have,” Carolanne Owenby said. “A lot of them are struggling for their lives. Many have lost limbs, have lost eyes, or they have lost their livelihood and ability to function as a normal child.”

Though Robert is healthy and happy, Carolanne said she feels for the children like him who are not.

The Little Heroes 5K will be at 1:30 p.m. Feb. 21 at the American Legion in Gainesville. The fun-filled event offers bounce houses, face-painting and crafts for the kids, as well as a “hero dash” for children, a 1-mile fun run and the 5K race.

Registration opened last week and can be completed online at www.active.com and www.runsignup.com. Last year, more than 300 people participated, and the Owenbys hope to see that number increase this year.

Carolanne Owenby said she hopes the event will increase awareness of the genetic condition from which her son suffers.

“Really, for Wesley and I, this is a positive way for us to deal with something that is negative,” Carolanne Owenby said. “God could have picked anybody to be Robert’s mom, and he picked me. He trusted me. And it is my duty, as his mother, to make our community, our friends and our family more aware.”

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