by Marie Baker
Epilepsy Lifestyle was set up to provide lifesaving monitoring equipment for people diagnosed with epilepsy. Marie Baker explains more about the charity.
The aim of Epilepsy Lifestyle is to improve the lives of children and adults diagnosed with epilepsy, by providing funding for sleeping/monitoring equipment.
Epilepsy Lifestyle was founded in March 2014, supporting children and adults with epilepsy in and around East Sussex, shortly after they branched out into West Sussex and Brighton and Hove in September 2015. Due to the success of the charity on 26th March 2016, exactly 2 years after first establishing, they launched nationally, providing support to anyone with any form of epilepsy across the United Kingdom.
The charity was set up by partners Marie and Ian, who both have children with a life-limiting form of epilepsy. Sadly they have a number of close family friends lose their children to a seizure during the night. This is the motivation behind Epilepsy Lifestyle, as Marie states “I can’t bare the thought of knowing that there is a piece of equipment which may help to detect a seizure during the night but families cannot afford them. The monitors can alert parents or carers to a seizure, allowing them to administer critical medication or call for emergency assistance if necessary. Parents and carers are exhausted, and nights are such a scary time for them.”
Epilepsy affects 1 in every 103 people in the UK, and SUDEP (Sudden Unexpected Death in Epilepsy Patients) affects approximately 1 in 1,000 epilepsy patients every year. The peace of mind that a monitor/sleeping solution can give to a family or epilepsy patient cannot be underestimated. No one should ever have to wake up to find their child or loved one has passed in the night from a seizure.
How can Epilepsy Lifestyle help? It gives patients and their families a choice of 4 different monitors/ sleeping solutions. 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 monitoring solutions they provide cost between £50 and £800.
Since setting up in 2014 Epilepsy Lifestyle has funded almost 160 pieces of equipment, consequently improving the lives of many families. The charity receives no statutory funding and therefore relies heavily on fundraising and grant making organisations.
The charity runs from a family home and has a very small team of 3 trustees and a small handful of volunteers. Without the dedication of these people the charity could not operate. When asked about his motivation, Ian who is a charity trustee and treasurer simply replied, “what we do is nothing compared to what the children with epilepsy go through. We play a small, but important part in helping to manage a child’s epilepsy.”
As with all small charities, Epilepsy Lifestyle would not be able to function without fundraising events and donations. People can also help by sending in their used stamps or having a collection box in their place of work. Please see the website for more information.
Epilepsy Lifestyle is currently able to run without a waiting list so if there is anyone with an epilepsy diagnosis who feels one of these monitors may help then the charity urge you to get in touch, either by emailing info @epilepsylifestyle.org.uk or through the contact form on their website, www.epilepsylifestyle.org.uk