Lucy
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
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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.
Frank
At 4 months and 2 weeks old, Frank had his first seizure. Mum, Katie, shares their story.
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.
Liam
Liam, who lives in Northern Ireland, had his first seizure at just five months old. Mum, Clare, tells their story.
Jacob
Jacob was diagnosed with Dravet Syndrome at 15 months old. His mum, Jenny, shares the family's Dravet journey.
Neil
Neil, a healthy and beautiful baby, had his first seizure when he was 3 months. He was finally diagnosed with Dravet Syndrome aged 36.
Scarlett
Scarlett was born in 2014 and was diagnosed with Dravet Syndrome aged 2 years old
Sienna
Sienna’s Dravet journey started early - she had her first seizure in October 2011 at just over three months old. Her genetic test results were unusual, even by Dravet standards.