Finding Your Voice Through Dravet Syndrome

Emily Richins is the mother of a child with Dravet syndrome, a severe and treatment-resistant form of epilepsy that begins in infancy and is caused by variants in the SCN1A gene. Emily and her husband Chris Emineth share their journey from their son's diagnosis through navigating the medical system, accessing services, and finding community. They discuss the Dravet Syndrome Foundation, the Make-A-Wish Foundation, and how Kids' Waivers have helped their family access care. Their story speaks to the power of advocacy — and the importance of parents finding and using their voice.