Darcie and Evie
In loving memory of Darcie Chapman
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.
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.
Damian
In loving memory of Damian.
Joseph
In loving memory of Joseph.
Poppy
In loving memory of Poppy.