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Eastbourne mum Marie Baker hopes Epilepsy Lifestyle will support children and adults
10:19am Monday 21st April 2014 in News
A mother has launched a charity to help support children and adults with epilepsy.
Marie Baker, of Eastbourne, hopes Epilepsy Lifestyle will find answers to a wide range of problems people diagnosed with the condition face.
The main focus will be on issues surrounding safe sleep.
Epilepsy affects one in every 103 people in the UK and sudden unexpected death in epilepsy patients affects one in every 1,000 patients.
Mrs Baker knows firsthand how difficult living with epilepsy can be as her youngest daughter, Aimee, has a severe and life-limiting form of epilepsy known as Dravet Syndrome.
Aimee, who is eight and attends South Downs Community School in Eastbourne, was diagnosed when she was nine months old.
She has experienced countless seizures over the past eight years, many of them lasting for more than an hour.
Mrs Baker said: “Having a daughter with such a severe form of epilepsy has really opened my eyes to the condition and the struggles and stigmas people with epilepsy face.
“One very real fear we have for Aimee is that she will have a seizure in the night and pass away without us knowing. I firmly believe that no parent should ever have to wake to find that their child has passed away in the night.”
Epilepsy Lifestyle will initially be funding sleeping/monitoring support and equipment for anyone, child or adult, diagnosed with epilepsy in the East Sussex area.
As the charity grows, it hopes to stretch to West Sussex.
Mrs Baker is running the charity with support from two other mothers – Rachel Moran and Amy Thomas.
For more details about its work visit www.epilepsylifestyle.org.uk.
Anyone wanting to help with fundraising ideas or with running the organisation, can email email@example.com.
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