A family is calling for greater awareness of a rare and life-limiting form of epilepsy.

Nancy and Martin Dixon, from Dibden in the New Forest, hope to improve understanding of Dravet Syndrome, which affects their 11-year-old daughter, Faith.

The family is supporting a national campaign by Dravet Syndrome UK during June to raise awareness, improve diagnosis, and secure better care for those affected.

Nancy said: "Faith’s first seizure went on for over 45 minutes.

"It was completely out of the blue, there was no epilepsy in the family, nothing, and because we’d had five months of having a ‘normal baby’, we just weren’t expecting it.

"It’s such a cruel condition. It’s mind-blowing what used to set them off."

Faith had her first seizure at five months old and was diagnosed with Dravet Syndrome at 15 months after repeated emergency hospital visits.

She now experiences developmental delays, autism, reduced mobility, and uses a wheelchair.

The Dixons are also calling for greater support after new research from the University of Glasgow, in partnership with Dravet Syndrome UK, revealed the severe psychological impact on parents.

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Nancy, who took part in the study, said the emotional toll is constant.

She added: "And the fear of it stays with you. And sudden death in epilepsy worries us every night.

"We hear of other children that have died overnight, and I still sleep in the same room as Faith, because then I get there quicker if she has a seizure in the night than the alarm going off."

Dravet Syndrome occurs in around one in every 15,000 live births and is among the most treatment-resistant genetic epilepsies.

It causes frequent and prolonged seizures, developmental delays, and additional conditions such as autism, ADHD, and difficulties with speech, mobility, and feeding.

Faith has recently experienced a period of relative seizure stability, but the family continues to face complex health and care challenges.

The research highlights the need for better-informed professional support and targeted interventions for families.

Dravet Syndrome UK provides emotional, practical, and financial support to nearly 600 families, along with education for professionals and research funding.