Raising awareness of ataxia
10-year-old Jordan Kohl latest in his family forced to confront disease
PINE CENTER - It's not surprising to Marcia and Brian Kohl if people have never heard of ataxia, but they're hoping to change that.
Ataxia is a progressive neurological disease that affects about 150,000 Americans, including the Kohl family. Brian and four of his siblings have the disease, as does the Kohl's 10-year-old son, Jordan.
The disease affecting Jordan is spinocerebellar ataxia type 2, one of almost 30 types of the disease. What started as slow eye movement has progressed to loss of coordination and balance and has affected his speech. With the disease it becomes difficult to walk, speak or swallow, and tremors, muscle cramps and memory loss can occur.
The Kohl family gathered on their deck Thursday at their home near Pine Center in southeastern Crow Wing County. Pictured are Marcia Kohl (left), Jordan Kohl, Brian Kohl, Hailey Kohl and Cameron Moser. The Kohls are putting on a benefit Sept. 27 at the Green Lantern for the National Ataxia Foundation, a disease with which both Brian and Jordan suffer. Brainerd Dispatch/Steve Kohls » Purchase reprints of this photo.
"It's progressive so every day is a little bit different than the day before," Marcia Kohl said Thursday at the Kohl's home near Pine Center. "There's things Jordan could do in second grade he can't do today. A lot of things he just has to find a different way to do them."
Jordan is a fifth-grader at Forestview Middle School. Because of the progression of his ataxia he has been limited to attending class for half days, and Marcia Kohl said her son is in school more for the social aspect than for an education. At some point, she said, Jordan will be unable to go to school.
It has helped Jordan to be able to go to his dad for support, but Brian said it's been difficult having to watch his son suffer from the same disease that has limited himself.
Jordan Kohl
Age: 10.
Family: Parents, Marcia and Brian Kohl; brother, Cameron Moser; sister, Hailey Kohl. Both Brian and Jordan suffer from ataxia, a progressive neurological disease.
School: Fifth-grader at Forestview Middle School.
Favorite hobbies: Riding his bike and four-wheeling. "It's hard for him to get around, but he can still cruise on his three-wheeled bike," his mom, Marcia Kohl, said. He also likes playing with play dough and on his Game Boy.
Favorite sports: Fishing and hunting. Because of his ataxia, it's hard for Jordan to climb into deer stand but his aunt built a ramp for him to get into his stand. His father said Jordan likes to fish for all species.
Favorite television show: He loves SpongeBob SquarePants. "It's actually a fairly decent cartoon," his mom said. "It's not annoying like some of them."
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There is no treatment or cure for ataxia.
"There's nothing you can do so you have to live it to the fullest," Marcia Kohl said.
This past spring Brian Kohl participated in a study of ataxia at the University of Minnesota. The Kohls were so impressed they decided to do everything they could to support the National Ataxia Foundation.
With the help of World Extreme Cagefighter and Brainerd resident Brock Larson, the Kohls will be holding a benefit from 3 p.m. - midnight on Sept. 27 at the Green Lantern eight miles east of Brainerd on Highway 18. The benefit will feature a meal at $5 a plate, a raffle and silent auction and a performance by the Wayne Renn Band. It will be a family event, Marcia Kohl said.
The Kohls not only want to support the National Ataxia Foundation but seek to educate people about the disease. Marcia Kohl said many people assume Jordan and his father suffer from other diseases. She also said many believe ataxia sufferers are actually drunk. In fact, Brian Kohl has a note from his doctor to explain his condition in case he is pulled over by law enforcement.
"Nobody's ever heard of it," Marcia Kohl said. "It's all brand new to them."
All proceeds from the benefit, including 10 percent of the Green Lantern's profits for the evening, will go to the National Ataxia Foundation. The benefit was planned to coincide with International Ataxia Awareness Day on Sept. 25. To make a donation contact Marcia Kohl at (218) 764-2084 or by e-mail at marciak@brainerd.net; and Megan Cummings at (218) 764-3181 or by e-mail at megtony@brainerd.net.
"We want everybody to know about it," Marcia Kohl said. "The more people that know about it the more we can do about it.
MATT ERICKSON may be reached at matt.erickson@brainerddispatch.com or 855-5857.