Max Miller Prior
In loving memory of Max.
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.
Ollie
In loving memory of Ollie.
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.
Iwan
Iwan was born in 2007. He was diagnosed with Dravet syndrome at the age of four.
Jake
In loving memory of Jake.
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.
Katie
Katie was born in 1981 and received a diagnosis of Dravet Syndrome when she was 29.