Jane Hanna & John Inverdale
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Each week on BBC Radio 4, charities are given the opportunity to appeal for support and funds.
In July 2010 John Inverdale from BBC Sports presented an appeal on behalf of Epilepsy Bereaved.
John was motivated to help the charity in this way after hearing about a young doctor who died from Sudden Unexpected Death in Epilepsy (SUDEP) just a few months following her graduation.
Rachel’s eight month old son Harvey was alone crying for his mum in the next room.
Rachel was diagnosed with Epilepsy aged 11 and she took medication to manage her seizures. She never let her Epilepsy get in the way of living her life. She was about to start training to become a primary school teacher.
No one ever warned Rachel or her family that there was any risk of death from epilepsy. They had never heard of the term Sudden Unexpected Death in Epilepsy.
Rachel & Harvey
Rachel’s mum said;
Finding Epilepsy Bereaved on the internet became a lifeline for us as a family and helped us to realise we are not alone in our loss and there is help for us through epilepsy bereaved whenever we need it.
In the UK, three people die each day from Epilepsy and the majority who die are young – between 20 and 45. Experts believe that around half of these deaths are potentially avoidable.
Epilepsy Bereaved are committed to changing this – to help health professionals and families understand how Sudden Unexpected Death in Epilepsy can be prevented and to get vital support for research.
Any death is tragic for those left behind, but a sudden unexpected death like Rachel’s is especially devastating & bewildering. Her family found that no one understood what they were going through until they found Epilepsy Bereaved.
The charity helps families with practical information and advice about dealing with inquests, medical information on SUDEP and other seizure related deaths along with much needed emotional support.
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Listen to our Radio 4 appeal
Rachel’s story
