Road race to fund Batten Disease research

Fourteen year-old Brandon Hawkins and his brother, 10-year-old Jeremy, spend their days like most kids their age.

They go to school, they play with their friends, and both love Beyblades and Pokémon.

But these brothers have something else in common they must face every day: Batten Disease, a rare and often fatal disorder of the nervous system that usually begins in childhood.

"A parent once described it like being blind, epileptic and autistic as well as having ALS (Lou Gehrig's disease), Alzheimer's disease and Parkinson's disease all rolled into a child who was once running, jumping, laughing and playing," explained the boys' father, Chris Hawkins.

"Amazingly enough, both boys are happy and enjoy life to the best of their ability. They are quick with a joke, love to prank others (mainly me) and have huge hearts for their fellow humans and animals."

Brandon and Jeremy were diagnosed with juvenile Batten Disease in 2006. The condition has progressed since then.

"Brandon has begun to slow down a bit in the last year or two," Hawkins said. "He uses a wheelchair and lift to get on and off the school buses, for safety reasons, and uses his chair for longer trips and outings, such as Concord Mills or a trip to Walmart.

"He recently had a couple of grand mal seizures, so we are monitoring him closely whenever possible. He and Jeremy are both almost completely blind."

Despite all their challenges, the brothers are very popular among their peers. Many in their community will do anything to help them out, including helping the family find a cure.

Chris Hawkins and his wife, Wendy, arrange various fundraisers throughout the year to raise money for Batten research. The next event is a 5K and 10K road race at Harris Road Middle School on April 28.

"This year's activities will consist of a free fun run at 8 a.m. and both a 5K and 10K at 8:30 a.m.," Chris Hawkins said. "Our goal for this year is $15,000 to $20,000, and all proceeds go to the Southeast Chapter of the Batten Disease Support and Research Association to support families affected by Batten Disease and to fund research for a cure.

"It just kills me to have to answer a question like, 'Dad, when are they going to find a cure for Batten Disease?' I wish I had the answer to that million-dollar question."

Even if you can't run, you can still help the Hawkins family with this event.

"Spread the word about this event and about Batten Disease," Hawkins said. "We are still seeking sponsors for the event. We will also need plenty of volunteers on the course and at the start and finish lines. Please contact our volunteer coordinator, Andy Brown, at to be added to our volunteer list."

To register or to find more about Batten Disease and the Hawkins family, visit their website at To reach Chris Hawkins directly, call 704-756-0521 or e-mail