MATTHEWS – Evan Makuch is wearing a sporty sweatshirt, sneakers and a big toothy smile, and there’s a dusting of freckles on his nose. Although immersed in an iPhone game, he looks up from the screen every few minutes to make a goofy face. He says he’s planning to dress as Jason from the “Friday the 13th” series for Halloween.
Evan looks like your average third-grader because he is. You would never be able to tell by looking at the 9-year-old that his story is far from that.
‘We were terrified’
Evan was 3 years old when he was diagnosed with epilepsy – six months after his first grand mal seizure. His mother, Laura, admitted she and her husband did everything wrong that day.
She said Evan was lying in bed next to her husband when he started shaking and kicking. They had never seen anyone have a seizure and didn’t know anyone with epilepsy. She started screaming and shaking Evan until he stopped and then took him to the hospital.
“As parents, we were terrified, but we thought, ‘Maybe this is just a one-time thing and he’ll just grow out of it,’” she said.
Six months later, Evan had another seizure. He didn’t shake that time, just turned his head and began blinking rapidly. The Makuchs learned it was a complex partial seizure – a type of seizure that arises in one lobe of the brain, rather than the whole brain.
Evan started having upwards of 20 complex partial seizures a day, each lasting only about 15 seconds, and no medicine seemed to help. Only when the neurologist on call at the hospital prescribed Evan a new medicine, specifically for complex partial seizures, did his seizures begin to taper down.
He was seizure-free for a year and a half, until they eventually returned. Following another MRI, the Makuchs learned their son had focal cortical dysplasia – a tiny area on his brain that didn’t completely form while he was in utero.
In March 2017, Evan underwent a frontal lobe resection at Duke Children’s Hospital in hopes of removing all epileptic tissue from the left frontal region of his brain. He has been seizure-free ever since.
The Makuchs learned a lot about epilepsy from Evan’s doctors, reading every article they could get their hands on and dealing with his disorder daily. They learned there are several types of seizures that can be triggered by various environmental and physical factors, not just flashing lights like people think.
Exerting energy, for instance, triggered Evan’s seizures. As a young boy, he wasn’t able to ride a bike or scooter, or climb on playground equipment for fear he might seize and injure himself. Jumping on a trampoline surrounded by a net was one of the only ways he could get exercise.
Still, the more the Makuchs learned about epilepsy, the more they realized how little the people around them were informed. It became their mission to spread awareness and breakdown the stigma, so people learn how to care for someone having a seizure instead of being scared when they see one.
“I want Evan to feel comfortable if he has to live with epilepsy for the rest of his life, that he goes on to live as normal a life as possible,” Laura Makuch said. “I don’t want anything to ever get in his way.”
Cornhole for a Cause
Today, Evan is thriving in third grade at Matthews Elementary School. He enjoys playing basketball and lacrosse and building forts with his friends at a nearby creek. His battle with seizures may be behind him, but for many families, their journey is just beginning.
That’s where Evan’s Epilepsy Event – Cornhole for a Cause comes in. All proceeds from the tournament on Nov. 11 at NoDa Brewing, 2921 N. Tryon St., Charlotte, go to Epilepsy Alliance North Carolina – a nonprofit helping people in the community living with epilepsy. Not only do they field 8,000 to 10,000 phone calls each year, but their support ranges from assisting with payment for medications to connecting people to doctors across the state.
Registration is $50 for a team or $25 for an individual to play. All individual registrants will be paired with another to create a team. Check-in starts at noon and bags fly at 1 p.m. First place winners receive $250.
All registered players will get an event T-shirt and anyone who buys an Epilepsy Awareness Bracelet at the event for $10 will get lunch provided by Tijuana Flats.
There will also be a kids zone hosted by Go For Fit Kids, live music with Rod Fiske and magic by Luke Kirchoff the teenage magician.
In 2017, the event raised nearly $12,000. Half of that money went toward seizure medications for those who either don’t have insurance or can’t afford prescriptions on their own. The other half went to a travel fund to help families when they need to travel for second opinions, phase testing pre-surgery and surgery.
The goal this year is to raise $15,000 and there are still several slots available for players.
Want to play?
Evan’s Epilepsy Event – Cornhole for a Cause is Nov. 11 at NoDa Brewing, 2921 N. Tryon St., Charlotte. Register as a team for $50 or an individual for $25 at www.evan4e pilepsy.com/registration. Check-in starts at noon and bags fly at 1 p.m.