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.
If you’re interested in sharing your own Dravet Journey, click here to find out more.
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.
Harry was diagnosed with Dravet Syndrome at 16 months old. His mum, Beth, shares their story.
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.
Kaiden had his first seizure at 4 months old. Mum, Alicia, shares their story.
Harry lives with his Mum Emma and little sister Lilly in North Wales. He had his first seizure at six months old.
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
Neil, a healthy and beautiful baby, had his first seizure when he was 3 months. He was finally diagnosed with Dravet Syndrome aged 36.
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday.
Harley was born in 2005 - he has Dravet Syndrome and a diagnosis of autism.
