Stevenson Ranch resident Alison Gampe has spent the last six years fighting for her son Cohen after he was diagnosed with intractable epilepsy at just 6 months old.
A disorder that causes life-threatening seizures, epilepsy is the fourth most common neurological disorder, with 1.2%, or around 3.4 million people, who reportedly had active epilepsy nationwide in 2015, according to the U.S. Centers for Disease Control and Prevention.
At just 6 months old, Cohen began having his first seizure episodes, Gampe said, adding, “Hestarted out having probably between 20 and 40 seizures a day… Ever since then, we’ve been battling to get him seizure-free with medication.”
When Cohen was almost 3, he received a Vagus Nerve Stimulation, or VNS therapy, device Implant. However, they are still working to find the right medication and treatment combination.
Since December 2015, Cohen has been put on hefty doses of various medications, some of which had nasty side effects, but he’s only been seizure-free for a total of maybe three months, according to Gampe.
“Obviously with epileptic medication, it’s going to sedate the brain, so you are going to always have that groggy feeling but… he was on one where he couldn’t even stay awake,” Gampe recalled.
The pandemic exacerbated the issue, as his parents didn’t want to switch medications and risk side effects that would require him to be hospitalized.
Even so, Cohen is pushing through, Gampe said, adding, “He’s just a really happy, fun-loving kid… If you saw him, you wouldn’t think he had epilepsy.”
Through the years, the Gampes got involved with the Epilepsy Foundation Greater Los Angeles, a nonprofit working to not only accelerate therapies to stop and cure epilepsy but also help those with epilepsy overcome the challenges of their disease.
Gampe created Cohen’s Crew, working with the local community to fundraise for the foundation, and each year, they create a team for the annual Walk to End Epilepsy, which is set to return to Pasadena’s Rose Bowl on March 6.
“We had the largest team coming out of Santa Clarita… with over 65 walkers under his name,” Gampe said of last year’s walk.
“The response we’ve gotten from the community has been overwhelming,” Gampe added. “You don’t realize how many people you can touch… I’m so grateful.”
Gampe hopes to continue fundraising efforts in Cohen’s name, hoping not only to help her son, but also others like him.
“Epilepsy is such a nasty, nasty battle, and every case is so so, so different, if I could just help one person that’s enough for me,” Gampe said.
For more information on the Epilepsy Foundation Greater Los Angeles, visit epilepsylosangeles.org.