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.
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.
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.
Harry
Harry lives with his Mum Emma and little sister Lilly in North Wales. He had his first seizure at six months old.
Josie-Mae
Josie-Mae had her first seizure at three and a half months and was diagnosed with Dravet Syndrome at one year old. Mum, Lyz, shares their story.
Liam
Liam, who lives in Northern Ireland, had his first seizure at just five months old. Mum, Clare, tells their story.
Sanvi
Sanvi had her first tonic-clonic seizure at 8 months old. Her parents, Jaish and Aditi, share their Dravet Journey.