Tom
Tom was born in 1993 and diagnosed with Dravet Syndrome when he was 14 years old. He's now a young adult, living at home with his parents.
Dravet Journeys
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. Here we share insights into their Dravet journeys.
We have gathered together a number of written stories and videos featuring children and adults from our Dravet Community. Find these through clicking on the filters, try searching for specific words e.g. "seizures", or simply browse the stories by clicking on the arrows. Always remember that, even though their symptoms and experiences may be similar, every child or adult 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.
Penelope
Penelope was born on the 22nd December 2017 and experienced her first seizure six months later; she was diagnosed with Dravet Syndrome in August 2019.
Arlo
Arlo experienced his first tonic-clonic seizure aged 2 months; he was 3 years old when finally diagnosed with Dravet Syndrome.
Mia
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday
Sienna
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.
Iwan
Iwan was born in 2007. He was diagnosed with Dravet syndrome at the age of four.
Ruby
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.
