Beth
Beth had her first seizure when she was just seven weeks old. Her Mum Jen shares Beth's story and how Dravet Syndrome has affected their family
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.
Orion
Reniece Thomas is mum to Orion who is five years old and has Dravet Syndrome. The family live in Lewisham, South London.
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.
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.
Tate
Tate had his first seizure at just 7 weeks old. His parents, Paul and Jade, share their story.
Calla-Rose
Calla-Rose had her first seizure at 8 weeks old. Mum, Nicki, tells their story and Dad, Lee, encourages others to reach out for support.
Penelope
Penny lives with her parents, Carrie and Adam, sister Ruby and brother Teddy. She had her first seizure, which lasted for 13 minutes, at 6 months old.