Jacob
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
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.
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.
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.
Iwan
Iwan was born in 2007. He was diagnosed with Dravet syndrome at the age of four.
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.
Poppy
Poppy had her first seizure when she was almost six months old but it wasn't until her fifth birthday that she was diagnosed with Dravet Syndrome.