Some people respond to a life-altering illness with fear, allowing it to debilitate them. But not Winfield’s Kaylee Smith. She’s responded to epilepsy by advocating for other kids who are just like her.
Kaylee, who has suffered from epileptic seizures since an ATV accident forever changed her life in 2016, is advocating both for increased awareness of epilepsy and for children to wear helmets when they’re on ATVs. Three weeks ago, the 13-year-old, who is a sixth grader at Winfield Elementary School, was asked to take her story to Washington D.C., where she met with lawmakers and toured the capitol while also sharing her story.
During her three-day stay in the nation’s capital, Kaylee met with Senator Lamar Alexander, Senator Marsha Blackburn and Representative Chuck Fleischmann. Her message to the elected officials? “I talked to them about things we can do to fix epilepsy,” she said.
It’s a journey that began when Rosemary Jeffers — a nurse in the Scott County School System — visited Winfield with a specialist who deals with traumatic brain injury, which is what prompted the onset of epilepsy in Smith. From there, Kaylee’s mother — Amanda Massengale — began researching and discovered the Epilepsy Foundation of East Tennessee. Kaylee’s story was written, and she was selected to be an advocate for epilepsy.
An unfortunate accident
Kaylee Smith doesn’t remember anything about the ATV accident that occurred back in 2016. She knows only what she’s been told — she was riding with a friend, and she wasn’t wearing a helmet. When they crashed, the ATV wound up on top of her. She suffered a brain bleed, which led to epilepsy.
“We had to go through quite a bit,” Massengale said of her daughter’s journey to a diagnosis. “She began having seizures three days after she was discharged from the hospital. We made several trips to the emergency room.”
In those early days, Massengale was frustrated. Doctors seemed to dismiss the idea that something was wrong with Kaylee. Then one day she suffered a seizure in the doctor’s office. That changed things.
“We had had several tests, but it took her having a seizure in the doctor’s office for them to say, ‘Okay, this is serious,’” Massengale said. “It started rolling from there, and she was diagnosed with epilepsy in November 2016.”
‘Really scary, really terrifying’
Anyone who has experienced a seizure knows how frightening they can be — especially when they occur for the first time. A seizure occurs when neurons misfire within the brain, causing. An electrical discharge that leads to involuntary muscle twitches and spasms, altered behavior and thought, even unconsciousness.
“It’s really scary, really terrifying,” Kaylee said of experiencing seizures.
A single seizure is referred to medically as an acute seizure. An epilepsy diagnosis is made after someone has two unprovoked seizures that don’t have a known cause. Kaylee was having as many as 10 seizures in a single day.
“There are no words to describe the fright,” Massengale said. “Every seizure is different, and it only takes one seizure to end her life. It’s serious and not something to be taken lightly.”
For Kaylee, the new diagnosis was life-altering. She was a straight A student who was used to being active in sports. She played soccer, ran cross-country.
But after her diagnosis, she couldn’t even go to school. She was home for more than a year. Now, she’s generally not allowed to play sports — although her doctors did release her to play soccer on Winfield’s school team this spring, thanks to some “begging and pleading.”
Though there’s no cure for epilepsy, Kaylee’s is under control, thanks to a litany of medication that involves taking 17 different pills a day. She hasn’t had a seizure in five months — though Massengale said you always wonder, in the back of your mind, when the next one will come.
Control, though, has come at a cost. The medication that stops the seizures is designed to slow down Kaylee’s mind. Academic achievement doesn’t come as easy as it once did; “we’re just tickled to death now if she maintains a C average,” Massengale said. And she may never be able to play all the sports she once thought she would.
It’s also affected Kaylee’s personal life. You find out quick who your friends are when you aren’t able to do everything other kids do — like go to Jump Jam, or a birthday party. Kids can be mean to one another, and Kaylee said she’s been made fun of at school, by kids who say she uses the seizures to her advantage.
“Sometimes it’s hard, because my friends don’t understand what it’s like if I have a seizure, and they don’t understand why I can’t do things with them,” Kaylee said.
“Some of the kids have been pretty good; others have said some things,” Massengale said.
This year, Kaylee transferred to Winfield. Massengale said the experience there has been a good one; certainly much better than her old school, and Winfield’s staff even organized an epilepsy awareness day in November.
Telling her story
Rather than dwell on all the negatives of her condition, Kaylee is working hard to make sure that everyone is aware of pediatric epilepsy, as well as the need for kids to wear helmets when they’re riding an ATV. She’s under a year contract with the epilepsy foundation to advocate. Her mother said it’s a worthwhile effort.
“It’s something you don’t hear about often, as much as you do autism and things like that,” Massengale said.
Currently, there’s an effort to pass a new law at the national level that would increase training in epilepsy response for school nurses and teachers, while putting other initiatives into place to keep kids safe in school. settings.
“There’s so many different triggers that people need to be made aware of,” Massengale said.
Kaylee’s story was used by the epilepsy foundation to encourage people to donate helmets that could be worn by children who might otherwise not have one. More than 1,800 helmets were gathered.
Asked if she has advice for other kids, Kaylee doesn’t hesitate: “I’d say wear a helmet!” she said.
In fact, Massengale said it angers her now to see kids on an ATV without a helmet.
“She was very, very lucky,” she said. “It’s a law that they have to wear a helmet, but so many choose not to. Parents need to enforce that more. Cops need to enforce that more.”
In the meantime, Kaylee is a normal, 13-year-old middle school student. She may not yet be able to do quite everything that other students her age are able to do, but she’s not letting that hold her back — especially as she uses her story as a learning experience for others. And, as a result, she got to do something very few kids her age are able to do: visit the nation’s capital, and visit some of the most important people there. She highly recommends the trip, especially if you enjoy history — which she does. “My only advice,” she said, “is that you just need to bring comfortable shoes.”