Eastbourne mum's charity to expand its services nationally
Epilepsy Lifestyle is expanding its potentially life-saving monitors to sufferers across the UK.
The charity was founded in March 2014 by Eastbourne mum, Marie Baker.
Marie has a 10-year-old daughter with Dravet Syndrome, a life-limiting neurological condition that causes severe epilepsy.
Marie’s daughter Aimee has very uncontrolled seizures, sometimes lasting hours. It was Aimee’s condition and the lack of practical support that prompted Marie to set up Epilepsy Lifestyle.
Epilepsy affects approximately one in every 103 people in the UK and SUDEP (Sudden Unexpected Death in Epilepsy Patients) affects one in every 1,000 epilepsy patients every year.
There are a number of different monitoring systems that can alert to night time seizures, the peace of mind that a monitor/sleeping solution can give to a family or epilepsy patient can not be underestimated.
Marie said, “No one should ever have to wake up to find their child or family member has passed in the night from a seizure.”
Epilepsy Lifestyle gives epilepsy patients and their families a choice of four different monitors/sleeping solutions and they work with their beneficiaries and suppliers to ensure the most appropriate piece of equipment is chosen specifically for their circumstances and type of epilepsy. The monitors/solutions range in price from £50, right up to £850 and all work in very different ways. Epilepsy Lifestyle initially launched as an East Sussex charity providing local epilepsy sufferers with monitoring equipment, potentially life saving to those who are affected by night time seizures.
Thanks to a number of grants the charity were soon able to branch into West Sussex and the surrounding areas. And now after two very successful years, Epilepsy Lifestyle is expanding their services nationally.
Founder Marie said, “We are so excite to be in a position to expand our charity to be able to help children and adults with epilepsy across the entire country.
“It has been wonderful to provide these potentially life saving monitors at a local level and we’ve had the honour of meeting some truly inspirational people as a result, but to be able to extend this practical support nationally within such a short time since our inception is just fantastic.
“We are now the only charity in the UK who provides this equipment to children and adults with any form of diagnosed epilepsy with no mean testing and with such a wide variety of monitoring equipment to choose from.”
Epilepsy Lifestyle understand that when someone needs some form of night time epilepsy monitoring then that need is urgent and the charity prides themselves on their quick turn around when it comes to fulfilling the applications they receive. Visit www.epilepsylifestyle.org.uk.
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