Stevenson Elementary School is going to bat for a trio of kids fighting a rare condition.

Stevenson Elementary School is going to bat for a trio of kids fighting a rare condition.

The three children have Batten disease and are undergoing a clinical trial at Nationwide Children's Hospital.

The youngsters attend school at Stevenson; their families live in apartments at Grandview Yard.

"We are so grateful to be in Grandview," said Maria Graham, the mother of Layla, a 6-year-old taking part in the trial. The family is from the Atlanta area.

"From the first day we came here almost two years ago, the community has been so welcoming and kind to us," Graham said. "I give glory to God that we were in the right place at the right time. Grandview will always have a special place in my heart, even if I move back to Georgia."

Batten disease is one of 50 disorders involving genetic mutations that disrupt cells' ability to dispose of waste, said Margie Frazier, executive director of the Batten Disease Support and Research Association, based in the Grandview area.

"The body does not produce the enzymes needed to break down the waste," she said.

The disease mostly affects children, although it does develop in some adults.

The association is working with the drug manufacturer BioMarin and Children's Hospital in helping to coordinate the clinical trial.

"We moved our organization to the Grandview area so that our staff could be closer to Children's Hospital," Frazier said.

Grandview was selected as the host city for the trial participants because of its small school district and proximity to the hospital, she said.

The trial participants all have the late-infantile form of Batten disease, which begins between the ages of 2 and 4.

"The cells are thrown out of balance due to the accumulation of waste and patients begin to have seizures and gradually lose their eyesight and their ability to walk, talk and communicate," Frazier said.

Children with the disease typically die by the age of 11 or 12, she said.

Genetic material must be passed to a child from both parents for the disease to emerge.

"It's such a hard thing to comprehend," Graham said. "It's so rare. It affects only two to four children out of every 100,000 births. Layla had her first seizure at 31/2 and things went downhill quickly from there."

The clinical trial involves implanting tiny ports in each child's skull.

"You can barely see it," Frazier said. "It looks like a little cowlick on a boy. Girls hide it with a headband."

Every two weeks, the patients undergo a four-hour procedure involving the infusion of enzymes through the port, she said.

After more than a year and a half, the treatment appears to be slowing the progression of the disease in most of the patients who are participating in clinical trials, Frazier said.

"The results of the clinical trial have been extraordinary. It's the most exciting thing I've seen in my career," she said. "The kids are doing very well. We're hoping the drug will get FDA approval in the spring of 2017."

"It's giving us hope and optimism," Graham said. "That's something we haven't had before."

Layla will serve as a patient champion Oct. 16 during the Columbus Marathon, representing Mile 22 in the Grandview Yard area.

"We're organizing an effort to get as many students, staff and community members as possible to come out to Mile 22 and support Layla," Stevenson Elementary School Principal Angela Ullum said.

Playing host to the children participating in the local trial has been beneficial for all involved, she said.

"Our students are learning that everyone should be embraced and accepted no matter their abilities," Ullum said. "Our students have been extraordinary. I'm so proud of them."

Students are eager to be chosen to accompany Layla and the other trial participants to the playground, play with them during recess and eat lunch with them, she said.

"Her classmates make sure Layla is treated like any other child," Graham said. "She's just one of the class. To know your children are being treated in such a loving and caring way, I can't put into words what it means to Layla and our family."

"Layla is the happiest child you'll ever see," she said. "She's always smiling."

The Grandview community has embraced the students and the Batten disease cause, Frazier said.

Community members again will participate in the Battling Batten Disease 5K Run and Family Walk to benefit the Batten Disease Support and Research Association. The event will be held Nov. 13 at Scioto Audubon Metro Park in downtown Columbus.

The fundraising event is held in memory of Celia Betz, a Grandview resident with Batten disease who died in 2012.

"It's just a coincidence that the walk is held in honor of a Grandview resident and that the community is hosting the families participating in the trial," Frazier said. "It's a wonderful convergence."

For more information about Batten disease or to register for the 5K event, visit bdsra.org.

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