Mom Plans Crossfit Day Nov. 1 to Benefit LGS Syndrome
Kannon Cooper, now age 6, was 3 years old when he had his first seizure. Without warning, Kannon dropped, unconscious, in the driveway at his grandparents’ house.
“His development had been all typical until then,” said his mom, Andee Cooper. “We went to a neurologist who said Kannon had epilepsy.”
The type of seizure that Kannon had that day is called a “drop seizure” where a person loses consciousness for a few seconds and falls to the ground. From that moment on, Andee’s life became a dizzying, day-to-day array of medications, worsening seizures and worry. Despite medication, Kannon’s seizures became more numerous. Sometimes he would have hundreds of seizures a day, ranging from grand mal to small blinks to drop seizures.
“We went through a period of time where he was getting hurt all the time,” Andee said. “A lot of his seizures come on without warning. For example, we would be playing ball and he would drop and fall on firewood and scrape his face.”
Desperate to find an answer to Kannon’s illness, Andee took him to the Mayo Clinic where, after 10 days, he was diagnosed with Lennox-Gastaut Syndrome (LGS), a rare form of childhood-onset epilepsy.
According to the LGS Foundation, children like Kannon who have LGS have frequent seizures of multiple types, cognitive impairment and an abnormal EEG with generalized slow spike-and-wave discharges.
Andee learned everything she could about LGS. Through the Lennox-Gastaut Foundation, she was able to get more information about the syndrome. The foundation also holds regular conferences, and provided scholarships, which enabled Andee to attend.
The doctors at the Mayo Clinic changed Kannon’s medication, but the side effects required that he have monthly lab work to check his liver and bone marrow. And, despite the diagnosis and the new medication, Kannon still has seizures. “The best he’s ever done is 17 days seizure-free,” Andee said. “I’m thankful for one good day.”
Besides the seizures, Kannon regressed in other ways. He’s no longer potty trained, and his IQ is about 40, according to Andee. “He’s verbal, but non-communicative,” she said. “He’s limited to about three words at once, but he talks to everybody. He has no sense of danger. That’s bigger to me than seizures. He’s not afraid of heights, of traffic.”
Andee has what she calls “a village” to help her manage her life with Kannon. She credits Lords and Ladies Daycare, the special education teachers at Jenks, the LGS Foundation, the LGS Facebook page, Sherilyn Walton at TARC, even the pharmacist at the Jenks Walgreens. All of them have become, in important ways, part of Andee and Kannon’s village.
“You have to reach out to people,” Andee said. “My advice to other parents with kids with special needs is to be a voice for your child. If you don’t, no one else will.”
Andee had to let go of the dreams she had for her son after the onset of LGS. “But I’m okay,” she said. “It’s the happiest and saddest I’ve ever been. I’m so, so proud to be his mom, but I’m heartbroken that it happened to him.”
She admits that Kannon’s illness has changed her.
“I am a single mom, and you don’t have time to dwell on that,” she said. “I have those moments, but you just have to wake up and do it all again tomorrow. You have to keep going and keep making tomorrow a better day. I’ve learned more about advocating for my son. I feel like he’s made me a better person. It’s the worse possible way to learn it, but he has made me better.”