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, who 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.
Mia
Mia had her first seizure at the age of 19 months. Dad, Stuart, shares their story.
Harry
Harry was diagnosed with Dravet Syndrome at 16 months old. His mum, Beth, shares their story.
Tate
Tate had his first seizure at just 7 weeks old. His parents, Paul and Jade, share their story.
Elise
Elise lives as a full-time resident on a specialist school/college campus. Mum, Stella, shares their story.
Durga
Durga had her first seizure at 4 months old. It lasted for over an hour. Mum Radhika shares their story.
Joe
Joe lives with his parents, Emily and Toru, and younger brother Tad, in London. The family relocated from Singapore to the UK, following Joe’s diagnosis of Dravet Syndrome.
Charlotte
Charlotte is 25 years old and lives with her mum, Julie. She was diagnosed with Dravet Syndrome at 10 years old.
