The following is an article I originally wrote for the Polk County News & Democrat. It was published in early March of 2017 to promote the Epilepsy Service Foundation’s Walk for Epilepsy in Lakeland on March 4, 2017.
LAKELAND – Polk City mother Jessica Malloy had just gotten her infant son Layton home when she noticed something wasn’t right.
“I was a 21-year-old Mom and my two-week old started seizing,” she said. “We were taken to All Children’s Hospital and I was told that may son had a stroke in-utero that is causing him to have epileptic seizures.
Layton, who is now four, is one of the estimated 6,230 people living in Polk County with epilepsy .This is based on information provided by the Epilepsy Foundation. Malloy and her husband Joshua spent nearly every day with him in the hospital during Layton’s first year, seeking answers. His seizures became so frequent that he required a feeding tube.
“We went from expecting to have a healthy baby to being in the hospital at least twice a month due to seizures, and it’s still that way.”
Desperate for people who could understand her situation, she searched on Facebook. Malloy came across the Epilepsy Service Foundation of Central Florida. She’s been involved with the Foundation since 2014 and has contributed to the 2017 Walk for Epilepsy that will be held Lake Hollingsworth in Lakeland on Saturday at 8:45 a.m. Malloy said that the support she has received since joining has been invaluable.
“I can’t go to my friends who have normal kids about the stress I have if his insurance is going to cover his medicine or not. They just don’t understand,” she said. “It’s made it easier to deal because you know you’re not alone. Epilepsy a lot more common than most people think.”
A person is considered to have epilepsy if they have at least two unprovoked, or reflex seizures occurring greater than 24 hours apart. They could also be diagnosed if they have more than two seizures over ten years. They are also considered to have the condition if they are diagnosed with an epilepsy syndrome by a neurological professional.
“We serve probably a couple thousand a year,” said Tom Orth, Director of the Epilepsy Service Foundation of Central Florida. “In our whole service area there are actually 16,000 children teens and young adults that have epilepsy. That would be Polk, Hardee, Highlands, Hillsborough, Pinellas and Pasco. There are about 60,000 people living with epilepsy in our service area. It’s based on data from the Epilepsy Foundation of America.”
The Walk is meant create awareness and bring those with epilepsy out of the isolation they can sometimes face from limited travel and opportunities the condition often forces people into.
“That walk is there to create awareness for people.” Orth said. “Part of it is obviously to raise money, but a big part of it is to promote awareness in the community that there are people that have it.”
Orth began working with the Epilepsy Service Foundation in 1988 and he regularly helps parents and people dealing with an epilepsy diagnosis. He and the Foundation assist by helping people navigate health insurance and doctor questions.
He also said that he works to create an environment of understanding; having support groups for children, teens, young adults and parents. Orth said that advancements in technology and medicine have vastly improved the lives of those that receive an epilepsy diagnosis since he began his work.
“29 years ago there were only six medications to help people with epilepsy,” he said. “And if one of those six didn’t work, that meant that the person had intractable epilepsy and they couldn’t be controlled. Since then, we have over 30 medications now, we have a vagus nerve stimulator that can help certain people and help stop their seizures from occurring.”
One of the people that have benefited from the vagus nerve stimulator, or VNS, is Rhea B. Hansen of North Lakeland. She developed epilepsy in her early 20s; she had her first seizure while working at Walt Disney World and as was diagnosed with epilepsy shortly after.
People diagnosed with epilepsy cannot drive for at least six months and cannot drive again until they are controlled, according to Florida law. After receiving her diagnosis, Hansen could no longer work as a monorail driver and she became dependent on her family for transportation.
“I think that as an adult, the first impact of epilepsy is becoming dependent upon everyone in your family because you can no longer drive,” she said. “It makes you feel like a child, and sometimes people treat you like a child. It’s very frustrating.”
Hansen received her diagnosis in the late 1990s and at times suffered as many as 50 seizures in a three-month span. It wasn’t until 2005 that USF doctors at Tampa General Hospital were able to observe Hansen and find information that would change her life.
“I was referred to have surgery for an implant called a Vagus Nerve Stimulator (VNS),” she said. “It has similar technology to a pacemaker, but instead of sending impulses to the heart it sends them to the brain. This was a life changer for me.”
“We have tests that we didn’t have 29 years ago,” Orth said. “Like an MRI with an epilepsy protocol. A test like that can pinpoint the cause and tell doctors what’s going on in the brain. All those improvements can help people get their seizures under control and live a fairly normal life.”
Hansen said that her treatment gave her the courage to return to school, she is in her senior year of college and currently is interning at an elementary school in North Lakeland. She received scholarships from the Epilepsy Service Foundation that have helped her get through school. She lives with her husband Ron and two children, Zac and Keilah. She said the support was very much needed.
“Without donations and community support, that would have come out of my family’s pockets,” she said.
Dr. Daynet Vega is a neurologist whose expertise is diagnosis and management of epilepsy. She works at Watson Clinic in Lakeland. She said that thanks to funding and support for research, there are many promising treatment options available to those with epilepsy.
“Researchers are studying deep brain stimulation as a potential treatment for epilepsy,” she said. In addition, new minimally invasive surgical techniques, such as MRI-guided laser ablation, show promise at reducing seizures with fewer risks than traditional open brain surgery for epilepsy.
Researchers are also studying stereotactic radiosurgery (a non-surgical radiation therapy) as a potential treatment for some types of epilepsy.”
Epilepsy Foundation statistics state that about 80 percent of persons have either some or total control of their seizures.
“It’s now 20 percent that are intractable,” Orth said. “In 1988 I would say it was about 40 to 50 percent.”
Layton has partial control of his seizures thanks to two medications, but he still faces challenges. He receives physical and speech therapy and he isn’t as far along as kids his age, but he has made progress. He now attends Lina Vista Elementary and is enrolled in an ESE-VPK3 program.
“Instead of being (at the hospital) three weeks out of the month, we’re only there once or twice a month now,” Malloy said. “We were told by doctors when he was four months old that he probably isn’t going to walk or talk. Now he’s running, he talks up a storm, it’s like he’s an adult. He’s proven them wrong. That’s for sure.”
Malloy, a mother of four, said that Layton now plays shortstop in a local t-ball league, something that would have been impossible years ago.
“There were so many leagues that wouldn’t let him play because he had epilepsy. I had to sign extra paperwork to be able to do it. It was too much of a liability. But, I actually found two leagues that are letting him play. East Lakeland Baseball and North Lakeland Little League. I travel about 20 to 30 minutes.”
Orth said that the story of Layton and his family is the kind of work he’s been doing for 29 years.
“That’s the kind of hope that we want to give the community,” Orth said. “We people to know that there is an ESF that people can call us. That they can get some of the help like I’ve described.”
The Epilepsy Service Foundation is located at 4628 N Armenia Ave, Tampa, FL 33603
Their phone number is (813) 374-8907. Hours are 7:30 a.m. to 4 p.m. Monday through Thursday.
The cost to register as an individual walker at the 2017 ESF Walk is $20. A team of 6-10 is $180 and a team of 16-20 is $360. Each walker or team member will receive a t-shirt and raffle ticket. There will be games for kids, community vendors, and photo opportunities. Registration begins at 8 a.m.