Sole sisters x Caroline, Louise and Elaine
Sole sisters x
Fundraising for Young Epilepsy
Story
Thanks for taking the time to visit my JustGiving page.
We are proud to take on this challenge to raise important funds for the Young Epilepsy charity. and especially their #On Top of Epilepsy. Their unique blend of specialist services includes a school, college and residential services providing education and healthcare, offering diagnosis, assessment and rehabilitation.
Lou and I discovered a love of power walking when training for the London Marathon in 2020 and 2021 and Elaine has walked several marathons in the not so recent past. We thought that the 106kms ultra challenge around the Isle of Wight coastline would really test us all and we are aiming to walk continuously to complete the route as quickly as we can. Elaine will walk the first half of the course (52kms) and keep us moving at a cracking pace!
My daughter Edie turns 17 in a few weeks and we are still struggling to give her any of the freedoms that her peers enjoy. I see first hand the daily impact that the condition has outside of the seizures themselves. My lovely friend Lou has been with me along this challenging journey ever since Edie had her first seizure as a baby. Elaine's son Adam was diagnosed with childhood absence epilepsy as a toddler. While about 65% of children 'outgrow' this particular form of epilepsy for many the seizures continue.
Being the parent of a teenager is never easy and it can be especially challenging when you have a child with a chronic condition. Epilepsy affects 60,000 children and young people under 18 and over 42,000 18-25 year olds in the UK. Each one of these figures represents an individual whose epilepsy is as unique as they are. But epilepsy is not just about the seizures. It is complex and weaves its way into every aspect of a young person's life.
As a child develops they naturally want to become more independent especially as they make the transition into adulthood. But having epilepsy can affect this at every turn, especially for those who either develop it during their teen years or whose epilepsy does not respond well to medications or other treatments.
For teens and young adults it can be especially challenging - going out of the house alone, socialising with friends, travelling on public transport, going to parties, drinking, staying up late, working towards academic success, going to college or university away from home, getting work experience - all the things that young people want and/or need to do in order to build their independent future. The limitations can chip away at self esteem and confidence. It can make young people with epilepsy feel trapped, isolated, angry and frustrated. It can prevent them from following their aspirations.
Because of the unpredictable nature of the condition it can make every day potentially risky - fear and anxiety can take over. Imagine having to risk assess every time you want to do something without being accompanied and feeling that even going into a public toilet alone is a risk.
There are very limited outlets for specialised mental health support and this needs to be changed. Young people with epilepsy are 4 times more likely to suffer with mental health issues than their peers and 77% say that it has an impact on their mental health and how they cope with everyday life.
Young Epilepsy are running #On Top of Epilepsy campaign to make services available to all those who need it, instead of just the 15% of paediatric clinics that offer support at present.
We would really appreciate any donations that you can give to help us support the Young Epilepsy campaign and to motivate us to get those walking shoes on and get out training over miles of hills and roads for many, many hours over the next few weeks.
A huge thankyou from us all xx
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