Chase Johnson, 11, is like many boys his age. The Dripping Springs-area fifth-grader loves karate and basketball. He’s unlike most fifth-graders in that this year, he started his own foundation. Chase for the Cure tries to raise awareness about epilepsy as well as send kids to Camp Brainstorm, a one-week camp in Rockport for children ages 8-17 who have epilepsy.
The idea came from Chase because he knew students in school were learning about “all the popular diseases” like cancer and diabetes. “No one ever talked about epilepsy or asthma.” He wanted to know why that was.
Chase for the Cure is holding its first big fundraiser, the Hoop-a-thon and Skills Challenge on Oct. 22. At the event people can pledge to donate or get friends to donate money for each basketball basket they make in five minutes. People in sixth-grade and older can participate in a basketball skills challenge tournament and kids kindergarten through fifth grade can improve their skills at a clinic. Of course, there’s also a silent auction.
All the money will go toward helping send more children to Camp Brainstorm, which costs about $900 per kid, and to help Epilepsy Foundation of Central & South Texas raise awareness. Chase is also speaking at elementary schools in the Dripping Springs school district about epilepsy and the Hoop-a-thon.
Close friends know that Chase has epilepsy, as do his teachers, but most of his classmates don’t. Chase knows the statistics he got from the National Epilepsy Foundation: 1 in 26 people will develop epilepsy sometime in their lifetimes. In kids, it’s about 1 percent of all kids or 10 kids in 1,000. And while, his family has been told unofficially there are four kids at his school with epilepsy, they believe there’s probably even more.
Chase’s doctor, child neurologist and epileptologist Dr. Karen Keough, of Child Neurology Consultants of Austin, says epilepsy can be “a very stigmatizing diagnosis. There are many, many children with epilepsy… There’s so much epilepsy in children, it’s right under everybody’s noses.” Children who are on medicine for epilepsy often won’t have the grand mal seizure that you see in movies. “They’re more likely to have subtle seizures and might not be aware of them,” she says. “If you don’t know what they are looking for, you don’t know it’s epilepsy. It’s ‘that was weird. Why does that child do that?'”
Epilepsy also looks different for every kid. “Typical is not a good word to use in the world of epilepsy,” she says. “There’s so much variation.”
Epilepsy typically is first seen in infants or when the child is a toddler, Keough says. Usually new cases don’t happen when kids are in elementary school, but the risk of developing it goes up as puberty starts, she says. The other group of people that get newly diagnosed commonly are seniors.
Chase was diagnosed when he was 3. He didn’t have a grand mal seizure. Instead his seizures started in his face. He felt like his face and mouth were tingling. Now, if he’s awake, he can feel it happen because his jaw locks up.
Chase started on medication and tried many different kinds to control his seizures, which mostly happen at night. Father John Johnson even hooked up a motion-censored camera in Chase’s bedroom to record the seizures.
About two-thirds of otherwise healthy kids with epilepsy can manage their epilepsy on medication and about 80 percent of those otherwise healthy kids will outgrow epilepsy, Keough says.
Chase isn’t one of those. More than a year ago, he got a vagus nerve stimulation device, which some people call a pacemaker for the brain. Every 1.1 minutes the device in his chest sends a pulse for 14 seconds up a lead wire in his neck that touches the vagus nerve. That nerve runs from his brain stem to his abdomen. The pulse helps the affected part of his brain regulate his epilepsy. That combined with medication has reduced the number of seizures Chase has.
Chase knows when the device goes off and you can hear it in his voice, which gets gruffer, every time it fires. Other than that, which you would have to know about to pick up on that it was happening, Chase looks like a normal kid and seems like he has a pretty normal life.
Except, there is always the fear that he could have a big seizure again. The biggest danger of seizures is injury. In the United States, the most common causes of epilepsy death is drowning while having a seizure in water or a head injury from a fall, says Keough. (In the rest of the world, it’s falling into a fire.) Sometimes epilepsy that is not controlled leads to something called Sudden Unexplained Death in Epilepsy. Their heart stops in a seizure, Keough says.
Seizures also can damage the brain. The Johnsons know that Chase already has some memory difficulties, specifically in short-term memory processing. It just means that Chase needs to hear things more than once to retain it. “He has incurred some challenges,” John Johnson says. Though both his parents say that Chase has been lucky because they caught it early, before a big seizure and they have been able to regulate it with medication and the VNS device. Keough has told them not to be fooled that a big seizure won’t happen.
The lack of predictability of when a seizure is going to happen makes living with epilepsy hard. You can’t say, “I’m going to stay home on a Friday night because I know I’m going to have a seizure,” she says. “It happens at random,” she says. “And that’s hard to accept.” Doctors do know that two things might cause an increase in seizures: a fever or an infection.
For Chase, that means when he’s swimming, someone always has their eyes on him, which of course, he finds annoying, but he knows why that is.
While his parents worry, of course, about what will happen if he has a big seizure, Chase is more worried about making his next epilepsy presentation. “I’m nervous,” he says. “What if I mess up in front of the whole school?”
“He’s not shy about this,” says Mom Kelly Johnson. “He’s the best Chase you could have.”
What Chase wants you to know if you witness a seizure (from the back of his Chase for the Cure bbusiness cards):
Make a note of the time.
Cushion the head.
Remove the glasses.
Loosen tight clothing.
Turn the person on their side.
Put anything in their mouth.
Hold them down or restrain them.
Try to move them.
Put water or another liquid in their mouth.
Chase for the Cure Hoop-a-thon and Skills Challenge
When: 1-5 p.m. Oct. 22
Where: Dripping Springs High School gyms, 940 W. U.S. 290, Dripping Springs
Cost: $5 to participate in the Hoop-a-thon; $15 for skills challenge participants
Registration and information: chaseforthecure.net