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.
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.
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.
Emily
Emily had her first seizure at 4 months old. Her parents Catherine and Gareth, share more about 'coming to terms' with the diagnosis of Dravet Syndrome.
Finn
Finn had his first seizure at 16 weeks old. Mum, Helen, tells their story.
Paige
Paige had her first seizure at nine months old. It lasted for 4 and a half hours. Mum, Gemma and Dad, Martin share their story.
Frankie
Frankie had his first seizure at 6 weeks old, lasting over an hour. Mum, Stacey, shares their story.
Frank
At 4 months and 2 weeks old, Frank had his first seizure. Mum, Katie, shares their story.
Kaiden
Kaiden had his first seizure at 4 months old. Mum, Alicia, shares their story.
John Joseph
John Joseph lives in Northumberland with his mum, Georgina and younger sister, Nyla. He had his first seizure at five months old. Georgina shares their story.