By Sherida Mock
One day last spring, Chase Johnson came home from school fired up. The 5th grader realized he’d never encountered an awareness campaign for epilepsy, the neurological disorder that affects him daily. He’d heard plenty about other conditions—diabetes, cancer and more—but he saw that while epilepsy affects a lot of people (150,000 new cases per year, according to the Epilepsy Foundation), not many others knew about it. He was ready to change that.
By fall, he had launched Chase for the Cure, an epilepsy awareness foundation, and hosted a fundraiser to pay for kids with epilepsy to attend summer camp. His enthusiasm and dedication impressed not only his parents—Kelly and John Johnson—but his doctor as well.
“Chase is a little bit shy by nature,” says Dr. Karen Keough, a pediatric neurologist who has treated Chase since he was 3. “The prospect of public speaking was initially intimidating, but he overcame this due to the passion he feels about spreading the word about epilepsy. I cannot overestimate the importance of reducing stigma so that these children can support each other, and so that their peers can understand their condition.”
Chase and his parents met with us recently to talk about what he’s accomplished in this short span of time.
AFM: What’s it like living with epilepsy?
Chase: It’s hard to explain, because it’s different every single day.
Kelly: We’re constantly changing his medication.
John: With kids, you’re trying to keep them on just enough medicine: not any more than they need, but enough to cover what they need. But they’re growing, so those dosages are going to be constantly changing as they grow. About a year and a half ago, Chase had an implant put in. It’s a VNS (vagus nerve stimulator), and the layman’s way to describe it is like a pacemaker for your brain. We have started lowering the medicine to see if we can go with a smaller dose.
AFM: What made you want to start a foundation?
Chase: I told my dad that they’re always talking about well known diseases like diabetes and cancer, but they never, ever talk about epilepsy. I was wondering why no one ever does that. So, I had a couple of meetings with my principal [at Rooster Springs Elementary in Dripping Springs].
John: Chase came home to me and said, “I want to start a foundation.” He said he wanted to raise awareness, and he wanted to do a fundraiser. He already had the idea of doing something related to basketball. So, we went to the computer and started looking stuff up. We found the contact information for the Epilepsy Foundation of Central and South Texas. Chase went and talked with them for about an hour. We came out of it with some ideas and a plan for Chase’s Hoop-a-Thon. He presented his ideas to the high school basketball coaches and asked them for help, and it kind of grew from there.
AFM: How did it go?
Chase: Pretty good. It was 4 hours. First, we did a kids’ clinic for younger kids. After that, we did the Hoop-a-Thon. Basically, you shoot for 5 minutes and see how many you got. You get people to pledge money per shot, or they can do a flat pledge. After that, we had a skills challenge, kind of like the NBA March Madness skills challenge. While everything was going on in the gym, they were also having a silent auction in the hallway.
John: Depending on what comes in and final costs for paying for gyms and things like that, it’s going to be about $13,000 raised.
AFM: Who benefits from the funds?
John: One of the things Chase found in his research was a place called Camp Brainstorm. It’s a summer camp for kids with epilepsy. They are a lot of times turned away from summer camps, because they’re a high risk.
Kelly: There’s many years where Chase couldn’t go, because the seizures weren’t under control. We didn’t know about Camp Brainstorm.
John: It’s the same summer camp experience that any kid would have. And it’s free for them. It costs anywhere from $800 to $1,100 per child.
AFM: How else are you raising awareness about epilepsy?
Chase: I’ve been talking at the elementary schools in Dripping Springs. I’ve already gone to Rooster Springs and Dripping Springs Elementary.
John: He spoke at their assemblies to a thousand kids each time and did a little 5-minute education session. He talked about the numbers. He talked about the do’s and don’ts of what to do if you see someone having a seizure. He talked about what a seizure is.
Kelly: He’s going to be at Walnut Springs Elementary next week. His goal this year was to talk to at least one school. Now, he will have hit three.
AFM: Have you heard from anyone who heard you speak?
Chase: We have heard from someone.
John: After one of his assemblies, the principal sent us an email saying that one of the students went home and told her mom about a boy who came to the school and spoke about epilepsy. Her older sibling was just diagnosed a few weeks ago. And they were wondering if we could help them with some guidance on resources. We got them in touch with the Epilepsy Foundation and the social worker there.
Kelly: And Chase’s website.
John: I had a customer who was looking at the website the day he got diagnosed.