Grace was born on May 2, 2000, and experienced her first seizure at just seven months old. Initially diagnosed as a febrile seizure, her condition took a more serious turn at 11months when she suffered a seizure lasting over an hour and was hospitalized. From that moment, our search for answers began in earnest.
We pursued treatment options at UCLA, Denver Children’s Hospital, and the Children's Hospital of Wisconsin—each visit filled with hope, but ultimately no clear diagnosis. With doctors speculating and medications being trialed without confidence, we were still in search of more definitive guidance. In 2005 we moved from Denver to Dallas, it was here that a neurologist suggested genetic testing for the SCN1A gene, which finally provided us with a diagnosis after four years of uncertainty. However, the answer came with heartbreaking news: treatment options were limited.
Through the years, Grace has achieved a level of stability thanks to a carefully managed regimen of medications. Although seizures continue to be part of her daily life, we’re grateful that they’re largely under control. Last fall, however, we were reminded of the unpredictable nature of her condition when Grace was hospitalized with a severe lung infection. After a harrowing six-week stay and several prolonged seizures, we were blessed to bring her home.
Grace is still challenged by cognitive delays that align more closely with a 4-5 year old. Today she is a joyful and social young woman who attends My Possibilities, a school where she thrives. She’s surrounded by a loving family and caregiver Eva —an older brother, two older sisters, and two nieces—who shower her with warmth and support. She adores her friends and family, and we treasure every good day, knowing how precious they truly are.
Watching the Dravet Syndrome Foundation grow from a small community of struggling families to the vibrant organization it is today has been inspiring. Thanks to the generosity of donors, families like ours now have access to resources that didn’t exist when we were searching for answers. There’s still a long journey ahead, but we're optimistic that ongoing research will lead to better treatments—and one day, a cure.
Thank you for taking the time to learn more about Dravet syndrome and our daughter Grace.
