Natalia
Natalia had her first seizure at 16 weeks old and was diagnosed with Dravet Syndrome at age 2. Her mum, Nikita, tells their story.
Dravet Journeys
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. Here we share insights into their Dravet journeys.
We have gathered together a number of written stories and videos featuring children and adults from our Dravet Community. Find these through clicking on the filters, try searching for specific words e.g. "seizures", or simply browse the stories by clicking on the arrows. Always remember that, even though their symptoms and experiences may be similar, every child or adult with Dravet Syndrome is different and can present differently.
Calla-Rose
Calla-Rose had her first seizure at 8 weeks old. Mum, Nicki, tells their story and Dad, Lee, encourages others to reach out for support.
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.
Emily
Emily had her first seizure at 4 months old. Her parents Catherine and Gareth, share more about 'coming to terms' with the diagnosis of Dravet Syndrome.
Finn
Finn had his first seizure at 16 weeks old. Mum, Helen, tells their story.
Paige
Paige had her first seizure at nine months old. It lasted for 4 and a half hours. Mum, Gemma and Dad, Martin share their story.
Frankie
Frankie had his first seizure at 6 weeks old, lasting over an hour. Mum, Stacey, shares their story.
Lucy
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
