Sanvi
Sanvi had her first tonic-clonic seizure at 8 months old. Her parents, Jaish and Aditi, share their Dravet Journey.
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.
Harry
Harry lives with his Mum Emma and little sister Lilly in North Wales. He had his first seizure at six months old.
Josie-Mae
Josie-Mae had her first seizure at three and a half months and was diagnosed with Dravet Syndrome at one year old. Mum, Lyz, shares their story.
Liam
Liam, who lives in Northern Ireland, had his first seizure at just five months old. Mum, Clare, tells their story.
Tom
Tom is 28 years old and living with Dravet Syndrome. As well as experiencing around 30 seizures a month, he is autistic and has a learning disability. He needs 24/7 care.
Zaid
Zaid had his first seizure at 10 months old. His Mum, Sophie, shares their family's 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.
