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. 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.
If you’re interested in sharing your own Dravet Journey, click here to find out more.
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 had her first seizure at just nine months-old. Her mum, Juste, tells her story.
Zac had his first seizure at nine months old. Zac's Mum, Karen, shares their story
Curtis had his first seizure aged 4 and a half months old. His mum, Emily, tells their story.
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
Reniece is mum to Orion who is five years old and has Dravet Syndrome. The family live in Lewisham, South London.
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 had her first seizure at 4 months old. It lasted for over an hour. Mum Radhika shares their story.
Mia had her first seizure at the age of 19 months. Dad, Stuart, shares their story.
