Rosie is a charming and bubbly little girl whose magical smile lights up any room. At just three months old, she had her first major seizure, and by six months, a severe episode led to a diagnosis of Dravet syndrome. Despite initial developmental progress, Rosie’s condition caused regression, and at 3.5 years old, she is nonverbal. July 2022 was particularly harrowing, with Rosie needing CPR twice and enduring three prolonged seizures.

Currently, Rosie has a G-tube and a VNS implant. Over the years, we’ve experienced numerous medication changes with varying success. A significant blessing has been the SAMi 3 monitor from the Dravet Syndrome Foundation, which has provided us peace of mind, especially as most of her seizures occur at night. The Foundation’s support is invaluable, offering not only research funding but also essential equipment that brings light to our darkest times.

The Dravet Syndrome Foundation’s dedication to supporting families like ours is beyond words. Their work ensures that talented doctors have the tools needed to provide the best care for our children, giving us hope and making a world of difference in our lives.