Lincoln family shares son’s story for Epilepsy Awareness Month

Published: Nov. 19, 2020 at 6:13 AM CST
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LINCOLN, Neb. (KOLN) - November is National Epilepsy Awareness Month. In the U.S., 3.4 million people have epilepsy. Right here in Nebraska, more than 19,000 people are living with the brain disorder. 11-year-old Max Perry is one of them.

Almost everyday, you can catch Max reaching new levels on Candy Crush.

That’s when he isn’t having a seizure or as his parents describe it, having an “electrical storm” in his brain.

“We didn’t think that we would be affected by epilepsy, and then at 18 months, boom, first seizure,” said Nikki Perry, Max’s mom.

A few years and hundreds of seizures later, Max would have his first brain surgery at 5 years old.

“I just couldn’t deal with him having more seizures,” Perry told 10/11.

Months later, the Perrys packed their bags and headed to New York City to see a new brain doctor, specializing in those with epilepsy. Under his care, Max had brain surgery again.

Perry said, “We’ve seen some progress in his seizures compared to the first brain surgery.”

Max made it to kindergarten and into second grade, but things changed after that. His mom told us, “He’s actually going right now after school when all the kids are gone and working in the resource room for about an hour.”

Triggers like being overheated, not sleeping enough and getting sick can cause Max’s seizures to happen more often.

His mom always recognizes when things aren’t okay, hinting that a seizure is about to happen, like Max turning pale, slurring his words and losing his balance. However, before being officially diagnosed with epilepsy, Max’s mom says he was having seizures she wasn’t even aware of because when they happened, Max typically had a blank stare on his face and just seemed to be out of breath.

“Nobody thinks that it’s going to happen to them, but nobody knows who it’s going to happen to,” Perry shared.

If you’re ever around someone while they’re having a seizure, here’s what the Epilepsy Foundation says you should do:

Immediately, start timing the seizure. Move away anything that could hurt the person. Turn the person onto their side and put something soft under their neck. Don’t put anything in their mouth, and don’t hold them down. Stay with them until they’re awake and alert, and then call 911, if necessary.

His family continues raising awareness and advocating for those with epilepsy. His mom has testified in front of the legislature in support for the Epilepsy CBD trial. Max and his parents have shared his story with nursing students at UNMC, further educating them on epilepsy. Max was awarded a COVID-19 grant from the Child Neurology Foundation, where Max plans to represent award winners with neurological issues. His parents have also joined several Facebook groups, connecting with and supporting other families.

Right now, Max has seizures every seven to 10 days and is on seven different medications.

His mom explained that Max’s body, like many others with epilepsy can’t tolerate the “therapeutic dose,” and suffers with many of the side effects like appetite increase, weight gain, weight loss, dizziness, tiredness, rages, self harm, change in taste, not being able to sweat, change in smell, increase and uncontrollable body tics, repetitive noises, excessive crying and being extremely emotional. One of Max’s medications allowed him to go an entire month without having a seizure, but his mom says there is usually a honeymoon phase where Max’s body adapts, gets use to the medication, and usually tends to make seizures come back.

Max’s mom tells 10/11 the next step is for her son to get an RNS, a brain implant, which will hopefully, stop his seizures. Max also has a gene variant, so his parents say gene therapy might help. They have both had their genes tested and are in a database for gene therapy research and studies.

Despite going through hard times, Max’s family wants others with epilepsy to not lose hope.

“It may seem like there is no light at the end of the tunnel right now, but keep the faith. Don’t give up,” said Mitch, Max’s dad.

If you’d like to become certified in seizure first aid, The Epilepsy Foundation is offering Zoom classes during the rest of November. To register, click HERE.

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