Kendall's Story with Pediatric Epilepsy
On November 23, 2016, 12-year-old Kendall and her sisters were delivering pies to local police and fire stations to thank the first responders for their service throughout the year.
Like the girls, some of the firefighters wanted to show their gratitude, so they invited the sisters to check out the firetruck. As Kendall was exiting the truck, she fell into her mother, and then to the ground. The truck’s strobe lights had triggered her first seizure.
“Honestly, before my seizure I didn’t even know what epilepsy was,” Kendall said. “I had never heard of it or anyone who had it, so it just made me feel different from everyone else.”
And Kendall is different – but not quite in the way you assume. She is different in that every patient who is diagnosed with epilepsy is different. There are different causes, triggers and types of seizures. Kendall’s condition is unique to her, so she needs customized care to participate in activities she’s passionate about and achieve her goals.
“You wouldn’t know that Kendall has epilepsy when you see her interacting with friends, on the volleyball court or her academic focus, but we know it in the back of our heads,” Kendall’s father Matt said. “We’ve lived through her two seizures. They scared her, and they scared us.”
Despite Kendall’s epilepsy being fairly under control, Kendall’s parents initially feared having to tell their daughter she couldn’t drive or play sports like other kids her age. They feared she would lose “the freedom of growing up.”
When Kendall’s mother Laurie heard about an
epilepsy center being formed at Boys Town National Research Hospital to serve children like Kendall who need specialized care, she knew she had to learn more. She began communicating with the center’s medical director, Dr. Deepak Madhavan. When Boys Town Pediatric Epilepsy Center came to fruition, Dr. Madhavan connected Laurie with the neurology team.
They all immediately felt at ease with the
pediatric neurologists at Boys Town, and they credit her as the reason for much of their success.
“She [the neurologist] is amazing,” Laurie said. “She’s someone who listens to the whole patient. She wants to know what’s important to you and to your family. She wants to know how to tailor the care to you and what you want to accomplish going forward.”
Kendall’s parents have two main goals as they move forward: for Kendall to feel empowered and able to care for herself, and for Kendall’s epilepsy to be manageable without medication. With specialized epilepsy physicians on their side, they are confident that they can reach these goals.
“We didn’t have a bad experience with our prior neurologist, and it would have been easy to maintain status quo and not ask for more for our child,” Laurie said. “But Dr. Madhavan and everyone that we’ve had exposure to at Boys Town have all really given me this assurance that I made the right step converting her care to Boys Town.”
So yes. Kendall is different – but not in the way that you assume. She is different in that she has unique aspirations, which she will achieve with her distinct skills. And she is different in that she has unique goals, which she will achieve by following her own path.