When Jenn and Damson Huon adopted their son, Bohao, from China in February 2018, they knew he had a speech delay and was small for his age. What no one knew was that the then-6-year-old had epilepsy.
Three months after Bohao’s parents brought him home, his mother found him in bed one morning staring into space, dazed and unresponsive. He started convulsing, and she called 911.
The paramedics recommended the epilepsy specialist at UNC Children’s, kicking off what would become years of treatment for Bohao’s epilepsy. His seizures proved resistant to multiple medications, which sometimes caused difficult side effects. Over time, his seizures became more frequent.
“It got to where we couldn’t go anywhere, because he was having constant seizures, and I was on edge,” Huon says. “There were a lot of nights I didn’t sleep because I was running to his bedroom and turning into an emergency medical worker. It rips your heart out.”
They found their answer with deep brain stimulation, a relatively new technique in treating pediatric epilepsy. It involves implanting devices that target seizure networks in the brain to stop their activity. Bohao was the first child to receive the treatment at UNC, and he’s been seizure-free ever since.
“Right now, he can be a plain old kid who loves riding his scooter, going to the playground and hiking,” Huon says. “He loves to build things and is very creative. Just the other day, he worked with his dad to fix his scooter. When you have those little moments with your child, they’re a victory.”
