Cody Semrow is only nine years old, but his journey with epilepsy includes a misread MRI, multiple medication changes, unpredictable side effects, and, of course, seizures. However, it also includes a special friendship between Cody and his favorite musician, Jason Gray. This past summer the Semrow family organized a benefit concert with Jason to raise money for epilepsy research, connect families affected by epilepsy, and give Cody the chance to hear him play live.
At four years old Cody received a benign Rolandic diagnosis, and it wasn’t until years later that his family found out he actually had a focal cortical dysplasia, a common cause of refractory epilepsy in children. He was later also diagnosed with Continuous Spikes and Waves during Sleep (CSWS), a rare form of epilepsy that causes spikes during certain stages of sleep and cognitive and behavioral problems.
“When he was first diagnosed, Cody would say they were not seizures, just big hiccups. My husband, Chuck, and I even started using the word ‘carrots’ in place of ‘seizures’ just so it wouldn’t upset Cody if we had to talk about it around him,” says his mother Carrie Buck.
Due to the cortical dysplasia, it is unlikely Cody will gain complete seizure control. Yet, he’s gone as long as six months between simple and complex partial seizures, and his last generalized seizure was five years ago. This is all thanks to a combination of medication and an emphasis on sleep.
Sleep is an important part of Cody’s seizure control, and keeping a routine bedtime schedule means he often misses evening events, like musical concerts.
“I first heard Jason Gray on KTIS with my mom and dad. I like that it is Christian music, fun to listen to, and is calming,” says Cody.
Carrie echoes Cody’s sentiment that the music has a calming, almost mesmerizing effect on him. Since the first time hearing him play live at a daytime concert, Cody’s wanted to attend another concert of Jason’s. The late-night shows pose a problem, but Carrie and Chuck have found other ways to create a connection between Jason and Cody.
After getting the rare opportunity to personally meet Jason at an afternoon Q&A, Cody got a photo with Jason and received a signed copy of a CD. This friendship later allowed Cody to attend a pre-concert soundcheck, and Carrie to attend the concert that night. It was a 2-hour experience that opened her eyes.
“I was looking at the CD cover Jason autographed for Cody where he wrote, ‘Cody is beloved,’ and I had the thought that other parents who have children with epilepsy need to be reminded of that about their own kids too. I can get so bogged down in battling the disease that I forget to enjoy my child. I get so wrapped up in the grief, daily worry, and what-ifs that I don’t take a break and focus on things that give me joy. That concert gave me joy and I wanted to share it with others struggling with epilepsy,” says Carrie.
The result of her wanting to share that experience led to a benefit concert with over 180 attendees and raising more than $3,000 for EFMN and SUDEP research. Carrie organized the event with another mother who has a child with epilepsy, and the two helped attending families of children with rare epilepsies get a private meet-and-greet with Jason.
“My favorite part of the day was getting to see my friends and Jason, and that Jason even sang a song that he had not yet released called ‘Fight for You.’ So basically, the whole day was exciting and fun!” says Cody.
Cody’s journey has not been an easy one, and combined with other family health issues, the concert was a much-needed break during a stressful time.
“Until recently, I would not have said we were thriving with epilepsy. We struggled the first four years with incorrect diagnoses, medication side effects (thankfully vitamin B6 helps with Kepprage!), and impacted school performance. Nor could we say we were thriving with epilepsy because Cody gained full seizure control; he still has breakthrough seizures. However, now we are thriving with epilepsy because we are battling it by giving and helping others. Giving to EFMN allowed us to fight the stigma, isolation, and lack of funding for research,” says Carrie.
The Semrow family and Jason Gray have an upcoming benefit concert for EFMN on Sunday, July 26, 2020. For more details please contact kourageouskids@yahoo.com.