‘We stand together fighting epilepsy’

Skyler Moomey, 15, is battling convulsive seizures. And winning.

Zeeland West High School freshman Skyler Moomey has been battling opponents on the gridiron most of his life.

But the day before Thanksgiving 2015, Skyler met the one foe he couldn’t outrun or stiff-arm.

Epilepsy.

Skyler had been sleeping at his mom (Melissa) and stepdad’s (Michael) house when Michael heard thrashing sounds coming from Skyler’s bedroom. He opened the door to find Skyler in a full-blown seizure.

The family would later learn Skyler suffered from epilepsy, making him prone to convulsive seizures caused by abnormal electrical activity in the brain. They’re characterized by loss of consciousness and violent muscle contractions.

“I woke up in the ambulance on my way to the hospital and I didn’t know what was going on,” said Skyler, now 15.

His stepmom, Sarah Moomey, said Spectrum Health Helen DeVos Children’s Hospital doctors told the family that video games can sometimes trigger seizures.

“The light sequences can trigger seizures in people with underlying epilepsy,” Sarah said.

Skyler started to monitor his video game choices carefully.

A few weeks later, he experienced another seizure in the middle of the night. Then, during his third wee-hours convulsive seizure episode, he woke up.

‘Like I was drowning’

“I felt like I was underwater,” Skyler said. “I felt like I was drowning. At the very end, I realized what was going on and would start to breathe again.”

When Skyler is physically done seizing, he takes deep breaths while recovering and then sleeps for about 45 minutes. He often feels nauseous and sore after an episode.

Scans and an EEG failed to show any seizure activity.

“They did a CT scan and EEG and got nothing,” Sarah said. “The seizures were only happening at night, usually between 3 and 7 a.m., never outside of that window. Never during the day.”

Doctors gave him Keppra, an anti-seizure medicine.

“The frequency at night started to go down, but we started noticing changes in him during the day,” Sarah said.

Sarah, a Spectrum Health medical assistant who has worked in the emergency room and on neurology floors, said she knew something was wrong.

“All of a sudden things weren’t computing for him like they normally would,” she said. “We’d be in the middle of a conversation and he’d be off in left field. His mom noticed he was just kind of staring off a lot. He started to completely lose himself. It’s a scary road.”

Skyler started seeing Anastasia Luniova, MD, a pediatric neurologist at Helen DeVos Children’s Hospital.

Dr. Luniova asked Skyler to come in for a 72-hour EEG. He had to stop taking his medications beforehand in hopes of recording an actual seizure.

“He had five convulsive seizures in less than eight hours,” said Skyler’s dad, Mike Moomey. “Those were the only times they happened when he was awake. He had five at the hospital and one at home before we went to the hospital.”

Caught on video

Sarah recorded one of the hospital seizures on her cell phone. The video shows Skyler in full convulsive seizure mode, writhing and convulsing, dipping his head into the bed sheets as though trying to bite them.

His oxygen saturation rate dipped into the low 60s.

In the video, Sarah bursts into tears. It proved to be an emotional moment for her and Mike.

“That was probably the roughest day of my life,” Mike said. “It was the first time we had seen it during the day. He makes kind of a loud, gasping noise when it’s happening. It sounds like a noise out of a horror movie.”

The EEG successfully recorded two of the seizures.

Helen DeVos Children’s Hospital pediatric neurologist Jason Umfleet, MD, prescribed four medications, which Skyler had to take twice a day.

Skyler is now down to three medications and he has improved greatly, although he remains at risk for life-long epilepsy, Dr. Umfleet said.

“He’s been seizure-free for several months now,” Dr. Umfleet said. “As for a cause, it’s not clear if it’s genetic or a subtle structural brain abnormality that hasn’t been seen on an MRI.”

The medications appear to be working. Skyler hasn’t experienced a seizure since late November.

If the trend continues, Skyler could possibly return to the gridiron next season. It’s welcome news, considering last season he had to give up playing cornerback and tight end for his high school football team.

Even though he wasn’t on the field with his teammates, he asked the coach if he could give a speech to the team, explaining why he could no longer play.

He spoke about epilepsy.

Sharing secrets

“When you get diagnosed with something like epilepsy it changes your perspective and you feel like you’re going to be an outcast,” said Skyler, sitting in his Zeeland living room with his dad, stepmom and 11-year-old sister, Shaylee. “You think people are going to judge you. At first I felt different, not like everybody else, and that made me feel bad. I kind of pitied myself at first.”

Just as he’d aim to make comeback wins on the football field, Skyler overcame. He’s thankful for the support of two households: Mike, Sarah and Shaylee in one household; and Melissa, Michael and 1-year-old brother, Wyatt, in another.

His triumph became a win for others.

“I thought, ‘It’s not something I should be looking down on—it’s something I can help others understand,’” Skyler said.

He asked his dad and Sarah if they could order some rubber wrist bands with the words, “We stand together fighting epilepsy.”

They ordered 200 purple bands. He passed them all out within two weeks, including to all the members of the football team and his health team members at Helen DeVos Children’s Hospital.

The Moomeys ordered 500 more. Skyler continues to spread the word about epilepsy.

He also seeks out those who suffer from it.

“If I find someone else who has it, I want to let them know what I know and help them,” Skyler said. “I tell them, ‘This is the path that’s chosen for us and I think this is chosen for us because God thinks that we can take it.’”

Mike and Sarah said they couldn’t be prouder of Skyler and how he has turned an apparent loss into a tremendous gain.

“All his friends know, his teachers know, his principal has been amazing,” Sarah said. “There are no words for the support he has given us. He helped Skyler find the passion he found in wanting to help other people.

“He told him, ‘You’re in control of the message that’s given. You can let people guess about what’s going on with you, or you can say, “Hey, this is my deck of cards, this is what I’m dealt, this is what I’m playing with and here I am.”’ That’s what Skyler decided to do.”

Skyler said he told the football team and his friends that he “may look funny for a second, but then I’m back.”

A normal life

While waiting for football to resume, he plays catch in the backyard with his dad. He and Shaylee dance and sing along to a karaoke machine, sometimes with a disco ball spinning.

It’s all fun. And it’s all good.

He play-wrestles with the family’s 2-year-old chocolate lab, Bo, and pets the family’s older Doberman pinscher, Bella.

He researches athletes who are living with epilepsy, including former NFL stars Ronde Barber and Tiki Barber, who are brothers.

Skyler said he’d love to talk to them someday, about helping him in his efforts to bring awareness to epilepsy. He has tried to contact Tiki through Instagram.

He hopes to give a presentation at a school assembly someday.

“I want to go up and talk about the whole thing behind epilepsy and really raise awareness in our school,” Skyler said. “I want to explain what epilepsy actually is—it’s basically someone that’s more prone to getting seizures. In my case, in my sleep.”

He’ll tell his classmates he may do a strange little dance, “a weird juke or something, but I’ll be fine after a few seconds.”

Besides his passion for football, he’s also passionate about sharing his story.

“I’m thankful to be in the position I am,” Skyler said. “It makes me want to help people a lot more.”

Mike said his son will likely be on medication the rest of his life.

“There’s a small chance it could go away, but we’re told not to count on it,” Mike said. “We’re pretty stinking happy with where we’re at after all the stuff we’ve been through. It’s been a journey, there’s no doubt.”

Helen DeVos Children’s Hospital has West Michigan’s only epilepsy care program for kids, which includes a team of pediatric epileptologists, neurologists and neurosurgeons as well as special pediatric epilepsy monitoring unit.

 

 

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Comments (5)

  • It is awesome that this young man is using his medical condition to help others by sharing his story! Love the purple bands!!

  • Love the bands. As a Mom to someone who has epilepsy, Thank you!!!!!!
    Where can i get some bands, great idea on spreading the word.

  • Thanks for sharing your informational and inspirational story. I was not aware that seizures did not always appear on scans and EEGs. I applaud your determination to educate others.

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