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.
Thomas, aged 18, lives at home with his parents, Scott and Sarah, sister Poppy and brother Louie. He had his first seizure at 10 weeks old. Scott and Sarah share their family’s experience.
Jessie, now aged 20, had her first seizure at 10 months old. Mum, Rachel, shares their story from first seizures, diagnosis, through childhood and the transition to adult services.
Mo, aged 12, had his first seizure at 6 months old. Dad, Adam, shares their story.
Lottie, aged 2, had her first seizure, lasting 42 minutes, at just 4 months old. Dad, Gary, tells their story.
George had his first seizure at around seven months old. Mum, Susan, tells their story.
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
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 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 had her first seizure at the age of 19 months. Dad, Stuart, shares their story.
