Living with the unknown

Beth Sergent

March 20, 2014

POINT PLEASANT — Courage isn’t necessarily found facing a tiger in the jungle, or jumping out of an airplane. Sometimes courage is found by simply living a normal life while facing the unknown.

Take Ezekiel Ross, 12, who attends Hannan Junior High School, and Mark Kincaid, 11, a sixth-grader at Roosevelt Elementary, both live perfectly normal lives, but they suffer with the unknown — namely, epilepsy.

For those who have epilepsy, life is constantly facing the unknown and explaining their disease to people. Because of these reasons, and a need to raise awareness, the second Courage Walk for Epilepsy Awareness will be April 5 at Riverfront Park. Registration starts at 11 a.m. and the walk starts at noon. Walkers will travel north along the floodwall’s river walk and emerge on North Main Street, then travel back down Main Street to the park’s entrance for prize drawings and more fun. The Hannan High School Dance Team will also be performing.

Both Ross and Kincaid are members of local 4H clubs. Ross’ club, the Country Stars, decided to start the walk last year. Kincaid said once he heard about the walk, he knew he immediately wanted to be a part of it — as though a desire to do something collided with an actual plan started by the Country Stars.

Ross’ mother, Becky Hut, said the walk is successful because it receives support from countless 4H clubs, volunteers and the community at large. Last year’s goal of raising $4,000 was met with hundreds of people participating. All funds collected go to the Epilepsy Foundation of Greater Cincinnati and Columbus, which helps families in this area with things like purchasing expensive medications to treat the disease. Hut said her son has health insurance but without it, purchasing those drugs to treat epilepsy would be a real hardship.

Hut said epilepsy is overlooked because one can’t tell someone has it just by looking at them.

“I have a normal life, just sometimes not normal,” Kincaid said about what happens when he has seizures, which he says haven’t happened for about two years now.

Kincaid said most of his seizures occurred at night. Because of that, he thinks about them each time he goes to sleep.

“She (mom Emma Kincaid) thinks about it every time before she goes to bed,” Mark said, saying his mom waits for him to go to sleep first, which helps with the unknown.

“There’s not a time you don’t think about it,” Hut said, explaining that the unknown factor is always in the back of a parent’s thoughts.

Ezekiel also hasn’t had a seizure for about two years and said he doesn’t let the fear of the unknown affect him. He’s also hoping to get the word out and raise awareness about epilepsy with the walk.

Awareness is the key to acceptance. Emma said her father had the disease as a child and her grandmother lived with the guilt of feeling like she did something to cause it — this wasn’t true and speaks to years of superstition and false information about epilepsy.

“A lot of people get discriminated against and it’s not publicized,” Hut said. “If you have epilepsy, you’re the same as anyone else.”

With the walk, it’s also hoped people in the community who have epilepsy will realize there is now a local network of people living with and raising awareness about the disease that is no longer a cause for embarrassment or shame.

The deadline to pre-register and reserve a custom T-shirt is March 24. T-shirts will also be available while they last on the day of the walk. To pre-register, call Mark Findley at 1-877-804-2241 or Hut at (304) 576-3510.

The Country Stars have designed a custom T-shirt for the event. Cost to register and receive a shirt is $10. For those who wish to just participate in the walk, any donation is appreciated.