Robbie
Robbie, now aged 41, had his first seizure at five months old. He lives with his Mum, Fiona and Dad, Graham in Fife. Fiona 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.
Jessie
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.
George
George had his first seizure at around seven months old. Mum, Susan, tells their story.
Landon
Landon had his first seizure aged four months. He lives with his Dad Jack, Mum Emma and brother Louis in East Sussex. Jack shares their story.
Amelia
Amelia had her first seizures at just two months old. Mum, Jamie, shares their story.
Poppy
Poppy, age 19, lives with her Mum Vicki, Dad Karl and sister Lyla. Vicki shares their story.
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.
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.