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.
Durga
Durga had her first seizure at 4 months old. It lasted for over an hour. Mum Radhika shares their story.
Mia
Mia had her first seizure at the age of 19 months. Dad, Stuart, shares their story.
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.
Joe
Joe lives with his parents, Emily and Toru, and younger brother Tad, in London. The family relocated from Singapore to the UK, following Joe’s diagnosis of Dravet Syndrome.
Harry
Harry was diagnosed with Dravet Syndrome at 16 months old. His mum, Beth, shares their story.
George
In loving memory of George
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.
Tate
Tate had his first seizure at just 7 weeks old. His parents, Paul and Jade, share their story.