When an insidious disease like epilepsy strikes your son, you almost instantly become an advocate, Cooper said. After a period of asking “Why me? Why Kannon?” and grieving her son's diagnosis, Cooper has become her son's No. 1 advocate.
“I fight tremendously hard to get him services,” Cooper said. “I have written letters to Congress, insurance, grant people. I feel like I've written more letters this year than my whole life.”
Despite all the struggle — Cooper, 32, is a single mom who works full time — Cooper is just glad she has Kannon and that he's a happy little guy.
“Some people I have met in this journey are raising awareness because they have lost somebody.”
To help raise money and awareness for epilepsy in Oklahoma, Cooper and others have planned a major concert event and 5K run for March 23. The concert is part of Candlelight Concert Series, a national series of 50 concerts in 50 states in one weekend to raise money and awareness for epilepsy.
Emily Drennan has volunteered her talent for the concert. Drennan is a Norman native and a professional Broadway singer, recording artist and lyricist.
“I'm thrilled to be a part of something that is so important,” Drennan said.
She said a group of 20 local children will perform with her and that she and her band have taken the needs of people with epilepsy into consideration while planning the show. It will be a “safe place” in terms of lighting and other stimuli that may trigger seizures.
Living with epilepsy
For some people, epilepsy is a silent death sentence.
For example, the wife of the man who founded the Candlelight Concert Series lost his young wife of only two years to epilepsy. She'd only had four seizures during the six years he knew her, but she didn't survive the last one.
Kannon's prognosis “isn't bad,” Cooper said. As long as he doesn't badly hurt himself during a seizure, it's unlikely his seizures will kill him, doctors have told Cooper.
“He will most likely have a learning delay,” she said, due in part to a brain disorder he suffers in addition to epilepsy. “I kind of say that it's not necessarily good, but he's not going to die unless there's an accident.”