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.
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.
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
Harley
Harley was born in 2005 - he has Dravet Syndrome and a diagnosis of autism.
Mia
Mia was born in 2014 and diagnosed with Dravet Syndrome just before her first birthday
Riley
Riley was diagnosed with Dravet Syndrome at 3 years old. Watch a video about Riley's Dravet Journey aged 11, and then read about his life now as a 16 year old.
Ruby
Ruby was born in 2001. She was diagnosed with Dravet Syndrome aged just nine months.
