Tom
Tom is 28 years old and living with Dravet Syndrome. As well as experiencing around 30 seizures a month, he is autistic and has a learning disability. He needs 24/7 care.
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. Find these through clicking on the filters, try searching for specific topics e.g. "guidance and advice", or simply browse the stories by clicking on the name. 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.
Jacob
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
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.
Scarlett
Scarlett was born in 2014 and was diagnosed with Dravet Syndrome aged 2 years old
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.
Matthew
Matthew was born in 1994 and is a young adult living with Dravet Syndrome.
Mia
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday.
Toby
Toby had his first seizure at 8 weeks old and was diagnosed with Dravet Syndrome aged 7 months. Watch his video story.
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.