Lucy
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
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.
Lucy lives in Supported Independent Living. Mum, Denise, shares their journey.
Hannah had her first seizure at 5 months old and was diagnosed with Dravet Syndrome aged 3 years old. Parents Mark and Fiona share their story.
Kaiden had his first seizure at 4 months old. Mum, Alicia, shares their story.
At 4 months and 2 weeks old, Frank had his first seizure. Mum, Katie, shares their story.
John Joseph lives in Northumberland with his mum, Georgina and younger sister, Nyla. He had his first seizure at five months old. Georgina shares their story.
Harry lives with his Mum Emma and little sister Lilly in North Wales. He had his first seizure at six months old.
Sanvi had her first tonic-clonic seizure at 8 months old. Her parents, Jaish and Aditi, share their Dravet Journey.
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.