Edmond Man With Rare Disease To 'Ride' Marathon On Black Friday - NewsOn6.com - Tulsa, OK - News, Weather, Video and Sports - KOTV.com |

Edmond Man With Rare Disease To 'Ride' Marathon On Black Friday

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Jeff Kummer has a rare disorder known as Ataxia Telangiectasia (AT), which affects just 500 people around the world. For years, people have run marathons to raise money and awareness for the disease, but now, it's Jeff's turn. Jeff Kummer has a rare disorder known as Ataxia Telangiectasia (AT), which affects just 500 people around the world. For years, people have run marathons to raise money and awareness for the disease, but now, it's Jeff's turn.
EDMOND, Oklahoma -

An Edmond man with a rare disease is giving back this Thanksgiving by doing a marathon on Black Friday.

Jeff Kummer has a rare disorder known as Ataxia Telangiectasia (AT), which affects just 500 people around the world. For years, people have run marathons to raise money and awareness for the disease, but now, it's Jeff's turn.

"For the past 10 years I have watched and cheered as friends and family have run marathons on my behalf because I can't," said Jeff in a letter to his friends and family. "This year, I would like to do something for myself on behalf of the A-T Children's Project because I can."

So, while most people will be out shopping come Black Friday, Nov. 29, Jeff will ride a marathon on his recumbent exercise bike non-stop for the entire 26.2 miles.

"Like a marathoner, he's taking goo and liquids to make sure he's fueled up," said Greg Jehlik, Jeff's father. "We're treating this like it's an endurance event."

Because that's exactly what it is. Jeff is in the midst of a 10-week training program to prepare for his Black Friday ride. Right now, he's in the tapering phase.

"He's been riding exercise bikes to stay strong and to help when he transfers out of his wheelchair," said Greg. "But this is something he wanted to do on his own."

His ride is to raise money for more research in hopes of finding a treatment and cure for A-T, for which he suffers. When Jeff was born he appeared to be a healthy boy. He even played sports until he was 14, but his parents knew something was wrong. Jeff was finally diagnosed with A-T, when he was 13 years old, a rare genetic disease that affects balance, coordination and speech.

"He went from 13 to walking to 14 and 15, using a walker," said Kim Jehlik, Jeff's mother. "By the time he was 16, when everybody else was getting their driver's license, Jeff got his first wheelchair."

Children with A-T are usually confined to wheelchairs by age 10 and often do not survive their teens. The disease progresses fast and doctors said Jeff wouldn't live to be 20.

"The world kind of crashed in around me that day," Kim remembers. "I can still remember crying about it and scared that here I just got all this information that my son has a fatal disease and he's going to die from this."

But Jeff has defied the odds and is now 34 years old.

"I have really learned to live for the today, regardless with what we're diagnosed with, we don't know what tomorrow is going to bring," said Kim.

What we do know is that Jeff is destined, though, to pay it forward.

"You think you're having a bad day. Jeff's life puts it in perspective and as tough as he has it, and has had it, he never complains and that keeps us in check," said Greg. "And I think it's another example of how he inspires us and those around him. He's a hero."

If you would like to support Jeff on his Black Friday ride, just go to his fundraising page at www.atcp.org/jeff or mail in your donation directly to the Jeff/A-T Children's Project, 5300 W. Hillsboro Blvd. #105, Coconut Creek, FL 33073.

Find out more about A-T.

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