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.”

• Transcript

  Pediatric Epilepsy: Kendall's Story - Boys Town National Research Hospital

  I don’t know. I’ve just played it since I was like six. It’s the sport that I stuck with, like I used to play every sport, but volleyball has just always been like my favorite. At first with volleyball it definitely affected me because I had hit my head and I didn’t want to like hit my head like going for a ball and I didn’t want it to get like any worse. Kendall had her first seizure November of 2016. It was the night before Thanksgiving and the girls and I were delivering pies to local police stations and fire stations just to thank them. Kendall actually got up in the fire truck and they encouraged her to turn on the strobe lights. So when she turned on the lights, it didn’t happen immediately but when she started to come back down off the truck, she fell into me and then proceeded to fall to the ground. At that point we didn’t know a whole lot about seizures. We didn’t know why. We didn’t know what to do. We didn’t know how to respond. We didn’t know if this was a lifelong disease. We didn’t know what that meant, so it was a very very scary hollow feeling as a parent. I didn’t even know what epilepsy was. I had never even heard of it. I hadn’t heard of anyone that had it so it just made me feel different from everyone else. I actually, through Kendall’s diagnosis, have become involved with the Epilepsy Foundation of Nebraska. The director for the Epilepsy Foundation actually referred me to Dr. Madhavan, who was starting the Neurology and Epileptology Center at Boys Town. I’m so grateful that she is able to continue with the things that she is passionate about. You wouldn’t know she has epilepsy when you see her on the volleyball court. You wouldn’t know it day in and day out. We know it in the back of our head and we’ve lived through the two seizures that she has gone through and they scared her and they scared us, but seeing her do day in and day out functions an​d going and diving for balls on the court, there is no more rewarding feeling then knowing she doesn’t have to live in fear and we don’t want her to is exciting for us. I think it is really easy to settle into care, sometimes and especially with Kendall’s epilepsy being controlled it would’ve been very easy for us to just maintain status quo and not ask for more for our child and Dr. Madhavan and everyone we’ve had exposure to at Boys Town has really given me this assurance that I made the right step in converting her care over to Boys Town. Thank goodness for Boys Town where we are today and where we are headed going forward.

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 M​adhavan. 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 n​eurologist, and it would have been easy to maintain status quo and not ask for mor​e 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 rig​ht 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.