Poppy
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
If you’re interested in sharing your own Dravet Journey, click here to find out more.
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. 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.
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.
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.
Katie
Katie was born in 1981 and received a diagnosis of Dravet Syndrome when she was 29.
Amy
Amy was born in 1995 and had her first seizure aged just 8 weeks. Read her story of growing up with Dravet Syndrome.