The day Andee Cooper saw her then 3-year-old son fall to the ground, hit his head on a car bumper and go into a full-blown seizure, her world came to a crashing halt.
That was the first of hundreds of seizures Kannon, who is now almost 5, would suffer.
In September 2011 he was diagnosed with epilepsy.
“In one year, I watched my incredible son regress from the child I once knew to a child I never thought I would have,” Cooper said.
Kannon started having as many as 70 seizures per day, Cooper said. After trying a multitude of medications that seemed to only make the situation worse, Cooper took her son to the Mayo Clinic where he was diagnosed with Lennox Gastaut Syndrome, a rare and extremely hard to manage form of epilepsy.
Since his diagnosis, doctors have prescribed a new medication for Kannon, Clobazam, which has helped keep his seizures to a minimum — a few seizures a day, Cooper said. In the past 18 months, Kannon's only had two seizure-free days.
“He's had several black eyes, bumps and bruises. He's got battle wounds to prove it,” Cooper said.
With Lennox Gastaut Syndrome, her son suffers from various kinds of seizures — grand mal, “absence” and, most scary to Cooper, “drop” seizures. Before most of his seizures, Kannon locks eyes with his mother, letting her know a seizure is coming. She gently helps him to the ground and stays by his side until the seizure ends.
“I just reassure him. I feel like he can hear me, whether that's true, I don't know,” she said.
Drop seizures are so frightening, she said, because unlike other seizures, drop seizures come with no warning and are most dangerous because of the risk of injury.
The state of epilepsy
According to epilepsy.com, epilepsy affects more than 3 million Americans of all ages — more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined.
Children under 2 and seniors are the quickest-growing demographics for epilepsy, said Ramona Hannah, a volunteer at the Oklahoma Epilepsy Association. About 37,000 Oklahoma children have the disease, she said, and Oklahoma needs much more support for the disease than the state currently has.
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.”