Poppy
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
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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. 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.
Penelope
Penny lives with her parents, Carrie and Adam, sister Ruby and brother Teddy. She had her first seizure, which lasted for 13 minutes, at 6 months old.
Jacob
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
Matthew
Matthew was born in 1994 and is a young adult living with Dravet Syndrome.
Amy
Amy was born in 1995 and had her first seizure aged just 8 weeks. Read her story of growing up with Dravet Syndrome.
Ruby
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.