Jacob
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
If you’re interested in sharing your own Dravet Journey, click here to find out more.
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. 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.
Neil
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
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday.
Harley
Harley was born in 2005 - he has Dravet Syndrome and a diagnosis of autism.
Amy
Amy was born in 1995 and had her first seizure aged just 8 weeks. Read her story of growing up with Dravet Syndrome.