‘Love is’ campaign launches featuring moving film about Etta, a young girl living with Dravet Syndrome

Today, Dravet Syndrome UK has launched a new ‘Love is’ campaign, which includes a powerful film telling the story of five-year old Etta – a brave young girl whose life has been shaped by Dravet Syndrome. The film offers an intimate view into the daily challenges faced by Etta and her parents Lucie and Jo and the vital support Dravet Syndrome UK provides.

The film highlights how families like Etta’s organise every hour around seizures: an emergency bag always by the door, medication alarms punctuating the day and trips carefully planned by the nearest hospital. Simple acts, even tucking Etta into her bed at night, can be fraught with worry and heartache. This is the devastating reality for families who are living with Dravet Syndrome.

Dravet Syndrome is a rare, life-long and life limiting neurological condition, which affects one in every 15,000 babies in the UK. It causes severe epilepsy and a range of co-occurring difficulties such as problems with mobility, speech and language, cognition and behaviour, and sleeping and eating. 

There is currently no cure for the condition and those affected require 24/7 care for life. Dravet Syndrome UK is here to make sure no family has to face these challenges alone. The charity provides support, education and research that brings hope for a better future. 

The ‘Love is’ campaign calls on supporters to become Friends of Dravet Syndrome UK by signing up to give a regular donation. A monthly gift provides stability today and momentum for tomorrow – keeping families connected, informed and empowered, while accelerating the research and professional education that improve long-term outcomes.