Thursday Apr 02, 2026

“It’s More Than Just a Seizure” Living With KCNA2 Epilepsy Day to Day

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with McKayla Leber, a KCNA2 mom, board member, and Air Force spouse. McKayla shares her family’s journey raising her son Aaron, now 11, while navigating frequent military moves and repeatedly rebuilding specialty care from the ground up.

Aaron’s seizures began at just 7 weeks old. McKayla describes the early emergency visits, stretches of normal testing, and the uncertainty that followed before genetic testing finally identified a de novo KCNA2 variant when Aaron was 2. At the time, he was one of only a handful of known cases worldwide.

The conversation also explores a pivotal moment during a military deployment, when Aaron developed a second seizure type while McKayla was home alone with young children. She explains what absence seizures looked like in real life and how frightening it was to recognize something new without immediate support.

McKayla offers practical insight for families who are:

Managing multiple seizure types
Restarting care teams after relocation
Learning to advocate clearly and efficiently in short medical appointments
Navigating developmental, communication, and learning challenges beyond seizures
Seeking more targeted research for potassium-channel disorders like KCNA2

She shares her structured approach to advocacy, including preparing one-page summaries for appointments, staying organized, and building connections across neurologists, therapists, schools, and specialists.

The episode closes with reflections on what life looks like for Aaron today, why KCNA2 is more than epilepsy alone, and what continues to give McKayla hope.

Medical note: This video is for education and support and is not medical advice. Always consult your clinician for medical decisions.

#KCNA2 #RareEpilepsy #MilitaryFamily #EpilepsyAwareness #GeneticEpilepsy #AbsenceSeizures #CaregiverSupport #PatientAdvocacy