From the NICU to a KCNA2 Diagnosis: A Parent’s Early Warning Signs

In this episode of the KCNA2 and Other Rare Epilepsies Podcast, Nancy speaks with Oriana Hornick, a longtime KCNA2 community member, KCNA2 Epilepsy Foundation board member, and research coordinator. Oriana is also the mother of Avery, now 9, who was diagnosed with KCNA2-related epilepsy in infancy.

Oriana walks through Avery’s early medical journey, including seizure concerns within hours of birth, a NICU stay, repeated EEGs, and starting anti-seizure medication while living abroad. At the time, she and her husband were teaching internationally, and Avery was born in Rio de Janeiro. The episode explores what it meant to navigate early uncertainty, language barriers, and complex medical decisions far from extended family.

The conversation also examines how KCNA2 can affect much more than seizures. Oriana discusses feeding challenges that led to a G-tube and later a GJ-tube, significant developmental delays, mobility limitations, and the adaptive equipment that supports Avery’s daily life. She explains how eye-gaze communication technology has opened new possibilities for expression and why their family chose an inclusive classroom setting with typical peers.

In addition, Oriana reflects on the importance of community, the urgency of coordinated research for rare epilepsies, and what she wants newly diagnosed families to know: take it one day at a time. Living in the present, even amid uncertainty, can protect the moments that matter most.

Medical note: This podcast is for education and support and is not medical advice.

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