On Saturday, Sept. 15 Seize the Day Rolla 5K Run/Walk will bring to Veteran’s Memorial Park a day of fitness, fun and education. The event is a joint effort of the Epilepsy Foundation of Missouri and Kansas, Rolla’s VFW Post 2025 and Salem’s VFW Post 6280. Jack’s Warriors, supporters of a Rolla youth born with epilepsy, will also be making an appearance to celebrate the progress of their little hero.
The Seize the Day Rolla 5K joins other run/walk events the Epilepsy Foundation has held in St. Louis, Kansas City, Springfield and Wichita, Kansas. Organizers say their goal is to raise funds for epilepsy research as well as provide education about and seizure-related health and safety. The 5K will also highlight the diversity of those suffering from epilepsy.
“We hope to see people with epilepsy, friends or family members of those with epilepsy or anyone who would like to learn more about how they can help,” says Katharina Surles, mother of a son with epilepsy and wife of Eric Surles, commander of VFW Post 6280 in Salem. “For too many years epilepsy has been something that hasn’t been talked about. People need to share their stories so others can know they’re not the only ones struggling with this disease. For many years Eric and I felt like our family was alone in this struggle. Then we discovered the epilepsy foundation.”
The 5K on Sept. 15 is the third in a series of efforts the Surles and VFW have undertaken to raise awareness of epilepsy and fundraise for research. Last year they organized a kayaking for a cure float trip on the Current River, and before that skydived out of an airplane. That feat earned Katharina her codename of “Sky Granny.”
“I loved the skydiving, but more importantly it raised a lot of awareness about how many people, including veterans, suffer from epilepsy,” she says. “We were featured in the VFW’s national magazine and the national epilepsy foundation’s website. Our YouTube video of it also has thousands of views.”
For her former paratrooper husband, the act it was a bit more routine.
“I used to be paid for that,” Eric Surles says. “In my career I made around 200-plus jumps.”
As commander of the Salem VFW, Surles adds that epilepsy creating extra struggles for many veterans is of key concern for advocates. He said the military-epilepsy connection is a prime reason the event is being held at Rolla’s Veterans Memorial Park. He cites VA statistics that approximately 87,000 veterans are annually treated for a seizure diagnosis. He says a new study further suggests that nearly 70 percent of veterans with seizures also have Traumatic Brain Injuries and PTSD. These Psychogenic Non-Epileptic Seizures, or PNES, have the same symptoms as epilepsy.
“It’s fairly common for our Veterans who’ve been hit by an IED to suffer from traumatic brain injuries,” Surles says. “There are also many cases where it goes undiagnosed for years. So, it is important for us to do these informational YouTube videos and epilepsy awareness events.”
In addition to veterans, Surles says people of all walks of life can suffer from epilepsy. He cites that nationwide it kills more people than soldiers who died during the Vietnam War, and more than 200,000 people in Missouri and Kansas alone currently suffer from the disease.
A prime example of how epilepsy can affect those of all ages can be seen with two-year-old Jack, a Rolla youngster born in October of 2016 at Phelps County Regional Medical Center. After continual head-drooping symptoms and worry within the family, his parents found out Jack had been born with a seizure-inducing brain tumor called ganglioglioma. He afterward was diagnosed with lesional epilepsy at nine months old and over the next year was hospitalized 10 times for extended stays, went through various tests and was put on multiple medications.
“We knew surgery was a possibility from the beginning,” says Angela Fariole, Jack’s mother and a reading teacher at Mark Twain Elementary School. “Jack had brain surgery this May. Almost an entire lobe of his brain was removed, but thankfully his tumor wasn’t cancerous. Miraculously, he was well enough to come home just two days later.”
Supporting Jack and his family through their battle with epilepsy have been hundreds of supporters who’ve organized themselves through a Facebook page called Jack’s Warriors.
“In the Rolla community we have only felt support,” Fariole says. “My husband and I moved here seven years ago from Conway. Since then we’ve made a lot of friends and connections, and after Jack was diagnosed with epilepsy so many times people stepped forward for us. Anytime insurance denied covering one of Jack’s prescriptions or we had a need, we would come home to find a gift waiting for us.”
Although Jack’s brain tumor surgery was successful, his battle is not over. He still faces requirements of daily seizure medications, frequent hospital stays, lab work, repeated MRIs, ophthalmology visits, and weekly speech, language, occupational and physical therapy. He has also endured developmental delays. Fariole says Jack and his family will be participating in the 5K on Sept. 15 to celebrate his ongoing progress through these hurdles. His five-year-old sister, Taylor, will also helping run a lemonade stand for research fundraising as a Kid’s Crew member with Epilepsy Foundation of America.
“I hope to see a big turnout of people,” Fariole says. "A year ago, we didn't know if Jack would survive the seizures, tumor and impending surgery. We hope all those who helped us get through that phase of the unknown will come and see him enjoy a fun day at the park."
In addition to the 5K on Sept. 15, Fariole will also hold a workshop to educate participants about seizure recognition and first aid. She encourages law enforcement, first responders, medical providers and caregivers from Rolla and the surrounding areas to attend. The workshop will be 10 a.m. to noon Nov. 3 at Greentree Christian Church. Brunch will be provided to participants. For more information visit https://tinyurl.com/rollaeducationevent or call (417) 664-0737.