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Gainesville family raises money for sons tumor-causing nerve condition
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Wesley, Robert, Carolanne and Kinley Owenby pose for a photo in their Gainesville home. - photo by Erin O. Smith

Little Heroes 5K

When: 1:30 p.m. Feb. 22

Where: American Legion, 2343 Riverside Drive, Gainesville

Price: $28

More info:


Robert Owenby is, for the most part, a normal 5-year-old boy.

He attends pre-K at Lakeview Academy in Gainesville, where after the first week he came home and said his favorite subject was Spanish.

"And the next week I said my favorite thing was P.E.," Robert said.

His favorite cartoons are "Lego Ninjago" and anything involving "Star Wars." Robert, whose father Wesley Owenby is a contractor, also loves "Property Brothers."

The only thing that might set his day apart from the routines of his fellow 5-year-olds’ is the time he spends wearing an eye patch over one eye.

The patch is a prescribed method for handling the symptoms of neurofibromatosis, a genetic disorder the Gainesville child was diagnosed with when he was almost 2 years old.

When Robert’s mother Carolanne Owenby noticed her 8-month-old baby boy had a swollen eye, she initially thought nothing of it.

"For the first couple weeks, we attributed it to ‘Maybe he got stung by something in the car, hit his face on the crib, whatever,’" Owenby said.

When the swelling didn’t clear, the family visited a doctor, who referred them to a pediatric ophthalmologist. A specialist in Philadelphia made the diagnosis.

Neurofibromatosis, or NF, is an inherited condition which carries a high risk of tumor formation. It is most commonly diagnosed in childhood and affects more than 100,000 people in the United States.

According to the Mayo Clinic, NF can lead to serious complications and pain later in life as the tumors grow. The tumors may eventually turn cancerous.

Years later, the Owenbys would meet another local girl, Anna Lee Weber, who was also diagnosed with NF.

"It’s more common than cystic fibrosis," Owenby said.

To cope with his diagnosis, Robert has been wearing glasses since he was 2 years old to combat the pressure a tumor caused by NF puts on his eyelid. He also regularly patches his "strong eye" in order to help the affected eye get stronger.

The Owenbys visit two different specialists in Philadelphia twice a year, and Robert also gets two yearly MRIs at Children’s Healthcare of Atlanta to monitor the tumor.

It was on a visit to the NF specialist that Carolanne Owenby, a personal trainer, stay-at-home mom and avid runner, got an idea.

"I was looking for a race to participate in while I was there, and I looked up charities for neurofibromatosis and discovered the Children’s Tumor Foundation was the organization that funded research for NF," Owenby said.

Owenby ran a half-marathon to benefit the Children’s Tumor Foundation in Philadelphia, but she didn’t leave her charitable ambitions in Pennsylvania. Three years ago, she and several friends organized a 5K race in Dahlonega to benefit the Children’s Tumor Foundation. Last year, Owenby and the same group of dedicated friends held another race in Gainesville, which raised $25,000 for the research organization.

"As a team, we have raised almost $75,000 in the past three years," Owenby said.

This year, Owenby and her team hope to repeat their efforts with the Little Heroes 5K, a race set to take place at the American Legion on Feb. 22.

In addition to offering bounce houses, face-painting, kids’ crafts and a tot trot, the 5K race has been declared a Peachtree Qualifier.

This year’s race has another special addition.

"We’ve added a heroes’ lap right before the race," Owenby said. "We’re going to have not just some NF heroes, but also some local heroes who are battling childhood cancer or have battled childhood cancer."

Owenby hopes the event will bring attention to the little-known genetic condition from which her son suffers, but also how many others are impacted by diseases the Children’s Tumor Foundation seeks to combat.

"We just want to show that this is really about serving this community and making this community aware of how many children face things on a daily basis they have no control or any power over," Owenby said.


Little Heroes 5K

When: 1:30 p.m. Feb. 22

Where: American Legion, 2343 Riverside Drive, Gainesville

Price: $28

More info:

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