Etta's story is one we've heard over and over from families living with Dravet Syndrome. Children like Etta, who live with Dravet Syndrome, require 24/7 care for life. 🕒 Dravet Syndrome is a rare, life-long and life limiting neurological condition that 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. Living with this complex condition can make the future seem scary and uncertain
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Etta's story is one we've heard over and over from families living with …
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Families like Etta’s plan every hour around seizures. An emergency bag by the door. Medication alarms punctuating the day. Trips mapped by the nearest hospital. Nights are the hardest - waiting, listening, worrying. This is the devastating reality for many families who are living with Dravet Syndrome - a rare, life-long and life limiting neurological condition which affects one in every 15,0000 babies in the UK. Today we're calling on you to support our 'Love is' campaign and give hope a helping
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Come with us for an exciting day with The One Show... 👀 We are still smiling ear from ear after the once in a lifetime opportunity to put Dravet Syndrome on the national stage on The One Show and to celebrate our superstar fundraiser, Mimi. ✨ We have received so much feedback from people from across the UK who have now become aware of Dravet Syndrome and the work we do thanks to this One Big Thank You feature. Thank you to all of the families who joined us on the day to say a special thank you
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