My daughter's name is Kaylee Marie Benitez. She is 6 months old and has KCNT1 epilepsy. She was diagnosed at 3 months old. We've been discharged about 2 times at Millers Long Beach from December to January, and now we're at UCLA Westwood from January till March. As parents, we've been challenged with many medications and around-the-clock care for her. She's had many seizures, and we're trying anything we can to help control them.

KCNT1 helps regulate how brain cells communicate. Variants in this gene can cause a range of symptoms—from difficult-to-treat seizures to milder challenges—and every person’s path is different. KCNT1-related epilepsy is an ultra-rare, severe genetic disorder caused by mutations in the KCNT1 gene, which leads to overactive sodium-activated potassium channels in the brain. This dysfunction causes excessive neuronal activity, resulting in early-onset, often treatment-resistant seizures that can significantly impact a child's development.