GREENVILLE, Ind. (WDRB) -- It's a disease that can come at any time, in an instant, for no known reason. Some experts say the fatal side of epilepsy isn't discussed often enough. Now, one family invites you to help find a cure.
It's been seven years since Cortney Johnson's mom passed and yet it's like no time has gone by.
"She was amazing, she was my best friend. She had a smile that just, it could light up a room, and she laughed. She lived her life like like there was never going to be another day. She had that big, huge personality, she walked into a room and everybody just kind of gravitated towards her," Johnson said. "She's missed, immensely."
Peggy Sherrell was diagnosed with epilepsy as a teen after having a seizure.
"Back then, people really didn't talk about it so once they figured it out they gave her the medicine and they did what they could but they really didn't tell anybody."
Monitoring sleep and medications sometimes weren't enough.
"The first time my brother and I saw her have one [seizure], I think I was eight and it was very scary."
Years later, Johnson and her mother went to a walk for epilepsy.
"There were tons of people there and she kind of looked at me and was like, 'wow, I had no idea that this many people are truly affected by it. It's not just me.'"
The embarrassment wore off. However, the seizures would still happen. It was August 2010.
"Ironically, I had just found out that I was pregnant. So, I heard the ambulance go by. I was going to surprise her with a 'world's greatest grandma' onesie and then I got the phone call."
When her mother hadn't left for work yet, her father had gone up to check on her and found her.
"When I got to the hospital, my uncle ran out to get me and if you know my uncle, he doesn't run. So, I knew something was wrong," Johnson said. "I'll never forget walking in there and they were all sitting in the little waiting room inside the ER. Dad just looked at me and shook his head and said, 'there's nothing they could do.'"
The coroner called it SUDEP, or Sudden Unexplained Death in Epilepsy.
"There is no form of medication that controls the seizures," says Deb McGrath, Executive Director and Co-Founder of Epilepsy Foundation of Kentuckiana. "We need to talk about it, it can't be in the shadows anymore."
"It was a huge tragedy and a huge blow to our family and we wanted to do something good with it, make sure her death wasn't in vain," Cortney Johnson said.
So, they held a golf scramble. "People came out of the woodwork," Johnson said.
Seven years later, more than $100,000 have been raised for the Epilepsy Foundation of Kentuckiana.
Since Sherrell's death, a SUDEP Institute has been created as well as a SUDEP Registry to help collect data and try to determine any commonalities or patterns in the deaths.
McGrath said it's families like the Sherrells who are making the effects of epilepsy more public.
"We've come a good way but nothing compared to where we should be when this is the number one chronic neurological condition facing the country," McGrath said.
The annual tradition is back.
"My mom was the epitome of living your life to the fullest and she always had a smile on her face and she loved life and she tried not to let her epilepsy slow her down and we want people to live like that but take care of themselves," Johnson said. "It's a way for us to raise awareness but also for us to celebrate."
The Peggy Sherrell Memorial Golf Scramble is Saturday, August 26 at Elk Run Golf Club at 1820 Charlestown Pike in Jeffersonville, Indiana. The day will include 36 teams, a silent auction, raffles and lunch. All of the proceeds go to the Epilepsy Foundation of Kentuckiana.
EFKY has also set up a scholarship in memory of Sherrell, offering $1,000 to a student living with epilepsy.
To sponsor a team or make a donation, call Cortney Johnson at (502) 438-0560 or email her.
For ways to take care of yourself and more information about epilepsy, click here.
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