Etta
Etta’s parents Jo and Lucie describe the path from Etta's first seizure to her Dravet Syndrome diagnosis and how support from Dravet Syndrome UK helps them manage daily life.
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.
John Joseph
John Joseph lives in Northumberland with his mum, Georgina and younger sister, Nyla. He had his first seizure at five months old. Georgina shares their story.
Sofia
Sofia had her first seizure at just nine months-old. Her mum, Juste, tells her story.
Zac
Zac had his first seizure at nine months old. Here Zac's Mum Karen shares their story
Curtis
Curtis had his first seizure aged 4 and a half months old. His mum, Emily, tells their story.
Beth
Beth had her first seizure when she was just seven weeks old. Her Mum Jen shares Beth's story and how Dravet Syndrome has affected their family
Orion
Reniece Thomas is mum to Orion who is five years old and has Dravet Syndrome. The family live in Lewisham, South London.
Ben
Ben received his Dravet Syndrome diagnosis as an adult, despite having had his first seizures, 3 febrile convulsions, at 5 months old. Mum, Liz, tells their story.
Durga
Durga had her first seizure at 4 months old. It lasted for over an hour. Mum Radhika shares their story.