Ben
Ben received his Dravet Syndrome diagnosis as an adult, despite having had his first seizures, 3 febrile convulsions, at 5 months old. Mum, Liz, tells their story.
Our stories
Receiving a diagnosis of Dravet Syndrome can be a frightening experience. Its important to remember you are not alone - other families are going through similar experiences. We have gathered together a number of written stories and videos from our Dravet Syndrome UK community. Find these through clicking on the filters, try searching for specific topics e.g. "guidance and advice", or simply browse the stories by clicking on the name. Always remember that, even though their symptoms and experiences may be similar, every child or adult living with Dravet Syndrome is different and can present differently.
Elise
Elise is daughter to Stella and Phil and older sister to Jasmine. She lives as a full-time resident on a specialist school/college campus. Stella shares their story.
Hannah
Hannah had her first seizure at 3 months old. Now a young adult, her Mum Kelly, shares more about the challenges they've faced and the transition from children's to adult services.
Charlotte
Charlotte is 25 years old and lives with her mum, Julie. She was diagnosed with Dravet Syndrome at 10 years old.
Lucy
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
Tom
Tom is 28 years old and living with Dravet Syndrome. As well as experiencing around 30 seizures a month, he is autistic and has a learning disability. He needs 24/7 care.
Neil
Neil, a healthy and beautiful baby, had his first seizure when he was 3 months. He was finally diagnosed with Dravet Syndrome aged 36.
Matthew
Matthew was born in 1994 and is a young adult living with Dravet Syndrome.
Riley
Riley was diagnosed with Dravet Syndrome at 3 years old. Watch a video about Riley's Dravet Journey aged 11, and then read about his life now as a 16 year old.