LUBBOCK, Texas — Saturday morning, dozens of people gathered for the 2022 Walk to End Epilepsy at McCullough Park, organized by the Epilepsy Foundation West Texas. It was the organization’s first event back in person in Lubbock since the pandemic started.
Each step the walkers took on Saturday was in support of someone they love with epilepsy.
“A lot of people don’t like talking about the fact that they have epilepsy or that they’ve even experienced a seizure, and it’s very important to normalize having seizures,” said Molly Siever, the special events coordinator for the Epilepsy Foundation West Texas.
Epilepsy is a neurological disorder that causes seizures. According to the Epilepsy Foundation, one in 26 people in the United States has epilepsy, making it more common than cerebral palsy, multiple sclerosis and Parkinson’s combined.
Due to COVID-19, Saturday morning was the Epilepsy Foundation West Texas’ first in person walk in two years. Many people with epilepsy are also high risk for the coronavirus.
“For a lot of these kids, [the pandemic] was very isolating … Getting these kids back together is something that they’ve been looking forward to for two years,” Siever said.
One of those kids was 11-year-old Carson Sledge, who couldn’t wait to get back out with his friends.
“He just wants to be part of the community,” said Courtney Sledge, Carson’s mom.
Carson spent the morning jumping around the bounce house and playing on the playground, making up for precious time lost in the pandemic.
“He has had seizures since he was seven months old. We still deal with them each day. Even though they’re relatively under control, they’re still scary because nothing is ever guaranteed,” Sledge said.
Sledge is exactly right. Epilepsy can take over a life — or even take a life in some cases.
Dana Marlar and her family know that firsthand. Epilepsy cost the life of her nearly two-year-old grandson Bradley in 2017.
“He looked just like my daughter — his mom — brown eyes, dark hair and a sweet smile, a true blessing to our family … Bradley is forever our angel baby,” Marlar said, holding back tears.
Bradley passed away from what’s called SUDEP, the sudden expected death of someone with epilepsy who was otherwise healthy.
In his honor, Bradley’s family has started the team Bradley’s Bunch, which has over 150 members across Texas,
“Before Bradley, I knew epilepsy but never thought of it, never [was] concerned, never crossed my mind,” Marlar said.
Karen Rose and her family on Team Ladybug are living with a similar loss. Rose came from Washington D.C. for the walk in honor of her daughter Jenelle Garcia, who died from SUDEP after a long battle with epilepsy in December. She was 38 and leaves behind two young kids.
“She was always fun loving, free spirited … We miss her, we miss her a lot,” Rose said with emotion in her voice.
“You just don’t realize, [epilepsy] could take somebody’s life as young as they are,” said Deidra Burleson, a friend of Jenelle’s.
Saturday was a reunion of all of these families, united in their grief and understanding, and so grateful for the work the Epilepsy Foundation has done to make them feel seen.
“The Epilepsy Foundation were the ones that helped us guide our steps to what we needed to do … People are not alone when it comes to this disorder,” Courtney Sledge said.
The Epilepsy Foundation West Texas raised nearly $10,000 with the walk, and all of that is going to help families with epilepsy. On April 9, the Epilepsy Foundation will be having another walk in Amarillo.