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.
Sienna’s Dravet journey started early - she had her first seizure in October 2011 at just over three months old. Her genetic test results were unusual, even by Dravet standards.
Toby had his first seizure at 8 weeks old and was diagnosed with Dravet Syndrome aged 7 months. Watch his video story.
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.
Jessie was born in 2006 and was diagnosed with Dravet Syndrome aged 4 years old.
Harley was born in 2005 - he has Dravet Syndrome and a diagnosis of autism.
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.
Arlo experienced his first tonic-clonic seizure aged 2 months; he was 3 years old when finally diagnosed with Dravet Syndrome.
