Our son Karson had his first seizure on July 2, 2025, at just 5.5 months old.
It lasted 12 minutes.
After additional seizures followed, genetic testing revealed a mutation in his SCN1A gene. From that point, our family’s life changed dramatically. Along with the usual responsibilities of caring for a baby, we quickly had to learn how to manage seizures, keep rescue medications close at hand, and live with the constant uncertainty of when the next emergency might come. During Karson’s first year of life, we spent 17 nights in the hospital by his side.
There are still many unknowns about Karson’s epilepsy and what the future may hold. The uncertainty can feel overwhelming, especially as we wait to see how he will progress and continue searching for answers. As his mom, I want to do everything I can for him. While I cannot predict when a seizure will happen or what his path will look like, I can help raise awareness and support the research that brings hope to families like ours.