Toby
Toby had his first seizure at 8 weeks old and was diagnosed with Dravet Syndrome aged 7 months. Watch his video story.
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.
Riley
Riley was diagnosed with Dravet Syndrome at 3 years old. Watch a video about Riley's Dravet Journey aged 11, and then read about his life now as a 16 year old.
Iwan
Iwan was born in 2007. He was diagnosed with Dravet syndrome at the age of four.
Jessie
Jessie was born in 2006 and was diagnosed with Dravet Syndrome aged 4 years old.
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.
Arlo
Arlo experienced his first tonic-clonic seizure aged 2 months; he was 3 years old when finally diagnosed with Dravet Syndrome.