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.
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.
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.
Mia
Mia had her first seizure at the age of 19 months. Dad, Stuart, shares their story.
Elise
Elise is daughter to Stella and Phil and older sister to Jasmine. She lives as a full-time resident on a specialist school/college campus. Stella shares their story.
Harry
Harry was diagnosed with Dravet Syndrome at 16 months old. His mum, Beth, shares their story.
Hannah
Hannah had her first seizure at 3 months old. Now a young adult, her Mum Kelly, shares more about the challenges they've faced and the transition from children's to adult services.
Kaiden
Kaiden had his first seizure at 4 months old. Mum, Alicia, shares their story.
Harry
Harry lives with his Mum Emma and little sister Lilly in North Wales. He had his first seizure at six months old.