An epileptic’s odyssey
Chase Johnson’s life has been affected by epilepsy for as long as he can remember—at least since the age of three, when he was diagnosed with the complicated neurological disorder. In elementary school, Chase learned a lot about diseases like cancer and diabetes but wondered why he heard so little about epilepsy, a disease that affects an estimated one in 26 Americans during their lifetime. The 10-year-old resolved to do something to change that.
One evening, Chase sat down with his father and told him he wanted to start an organization to raise awareness about epilepsy and help kids who suffer from it. John Johnson was amazed—and a bit overwhelmed—with his young son’s determination. “What do you do as a parent but say, ‘Okay, how can I help?’” Thus, Chase for the Cure was born.
Besides making more people aware of the disease, Chase wanted his organization to help kids who live with limitations on their life and activities because of epilepsy. He knows firsthand that an activity as simple as swimming can be life-threatening for epileptics—a seizure in the pool could quickly result in drowning—and that childhood pleasures such as attending summer camp are often not possible for kids with epilepsy.
When Chase heard about Camp Brainstorm, a camp for kids with epilepsy, he decided to help more kids attend it. Chase has been able to attend summer camp regularly because his doctors have been able to find medications that currently keep his epileptic events under control. But it was a long road to get to that point, as Chase’s mom, Kelly, recounts.
Chase began telling his parents he felt tingling sensations around his mouth at about age three. “He called them his ‘blinky’ things,” she recalls. The sensations quickly changed from small distractions to become complex partial seizures involving his entire upper body—jaws locking, eyes twitching—but without loss of consciousness. One seizure caused Chase to bite down so hard on the spout of his sippy cup that his front teeth bent totally forward.
“I took him to the doctor and said, ‘Fix it!’” says Kelly. But CAT scans and MRIs revealed nothing. Finally, John videoed one of Chase’s seizures and showed it to the neurologist, who immediately identified epilepsy.
The Johnsons say they felt relieved just to have a diagnosis. But then came the question, “What is epilepsy?”
Chase describes it as “like an electrical storm going off in my brain.” The Epilepsy Foundation explains that a seizure occurs when the normal pattern of electrical charges passing from cell to cell in the brain is interrupted by “sudden and intense bursts of electrical energy which may cause strange sensations, emotions, behaviors or convulsions, muscle spasms, and loss of consciousness.”
To complicate matters, epilepsy can be caused by a number of factors: an imbalance of neuro-transmitting chemicals, an abnormality in brain wiring, a head injury, brain tumors, lead poisoning, or infectious or genetic diseases. In more than half the cases, the cause remains unknown.
The major danger isn’t always the seizure itself. Most seizures end on their own and cause minimal concerns, according to the Foundation. More often, the real danger for epileptics is from injuries suffered during a seizure: everything from cuts and bruises to burns, bone fractures, concussion, or drowning. Sudden Unexpected Death in Epilepsy, though not frequent, is probably the most common cause of death from epilepsy.
The Johnsons spent several years exploring different medications for Chase, trying to find one that would control his seizures without having too many side effects. One relieved his seizures successfully but changed their normally sweet four-year-old into a “heathen”; another worked for a couple of years, but then suddenly quit working.
When he was eight, Chase spent a week in Dell Children’s Hospital, hooked up to EEG machines to pinpoint which part of his brain was being affected by his seizures. The tests revealed that his seizures weren’t located in one specific part of his brain, meaning brain surgery wouldn’t be a good option for treating his particular form of epilepsy.
Currently, Chase has a Vagus Nerve Stimulator (VNS) implanted in his chest, with a wire running inside his neck to connect to the base of his brain. It functions like a “pacemaker for his brain,” John explains, sending an electrical charge to Chase’s brain about twice a minute to keep its neurons firing correctly. “Right now, we’re seeing benefits,” John says. “It’s reduced the amount of medications he takes, and his seizures have gone from six to seven per night to two to three per week.”
Chase’s hope is that Chase for the Cure will help other kids live as normal a life with epilepsy as he currently can. For him, that normalcy starts with basketball.
John is president of the Dripping Springs Youth Sports Association’s basketball program, and Chase’s older brother, Ben, played on the Dripping Springs High School Varsity basketball team last year, so Chase’s idea to hold a basketball fundraiser was an easy fit with the family’s experience. With the help of DSYSA Basketball and DSHS Varsity Basketball teams, Chase for the Cure hosted a Hoop-a-Thon fundraiser last October in the DSHS gym. Participants secured pledges for every successful basket shot they could make in a five-minute session, and the event also featured skills challenge competitions in three divisions, a basketball clinic for elementary-age kids, and a silent auction.
The event raised $13,000, enough to send 16 kids to Camp Brainstorm this coming summer. The Johnsons are proud of the results—and glad the event is over. John says he lapsed into a “Chase for the Cure coma” the week afterward.
Now that Chase has tasted the difference his efforts can make in the world and has started giving talks about epilepsy at schools and on TV and radio, the family agrees that Chase for the Cure will continue. But it won’t totally take over the 11-year-old’s life, John promises. “He’s still a kid.”