Week 39 - Young Epilepsy
Falling on the floor and having a seizure is probably one of the most common responses when asked, "What is epilepsy?" and in truth, up until this week, it's what most probably would have been my answer too. What I didn't fully know or even understand the multitude of, was the other associated conditions and the impact on somebody's life that Epilepsy can have.
Driving up the narrow lane in Lingfield to Young Epilepsy I was slightly shocked to see an expansive village stretching out before me. Never had I ever fathomed that I would be turning up to one of the UK's most prestigious and state of the art campus', equipped with a medical centre, school and college all for young people affected by epilepsy. In honesty I thought they would be a team of enthusiastic people in a small national office, situated just outside of London campaigning for rights and running a help line; all of which they do, but only a very small part of their services.
It's probably best to start off by saying that there are two major elements to the charity; its national work and its local work.
Nationally, the charity campaign for everything from changes in government to medical research and the right to education; but locally the charity operate an expansive campus of facilities that go from a specialist school and college called St Piers, through to a state of the art medical facility; the most advanced in the country for diagnoses and therapy for young people with the condition.
I am very rarely lost for words, but pulling into the medical centre on Monday, I had wholly underestimated the size, impact and indeed importance of Young Epilepsy. With over 900 staff and almost 300 young people on site, the charity is far from small.
But - from a funding perspective they still struggle. With the majority of their revenue coming from the government, very little comes in the form of unrestricted fundraising. So it was a delight to join them a the London Half Marathon and see the wealth of great support from people with epilepsy and their families to Norman Cook (Fatboy Slim) raising vital awareness and money for the charity.
For my week with them, I was looked after by the lovely and charming Shannon, who went above and beyond every day. But before I could even put my bum on a chair and enjoy a nice cuppa - I was whisked around their 60 acres. Whilst walking around the site, basking in all its incredible glory I couldn't help but think that this haven is stuff dreams are made of. In the sense that if you found out your child was diagnosed with a life-altering condition, knowing they may need full time care, hoping and wishing there was a safe place they could go to and grow up with all the care and attention they needed. A perfect ideology of a small village with everything and everyone they needed to grow and develop safely. Well, believe it or not, Young Epilepsy has just that. A majestic oasis tucked into the Surrey countryside, specifically built for the sole purpose of catering to the needs of young people with epilepsy and their associated conditions.
Now - I bet you're all wondering what these 'associated conditions' are that I keep going on about. Believe it or not there are over 50 types of epilepsy - from drop seizures or slight hand twitching and conscious outbursts. Everyone with the condition has different symptoms. But most notably is the lasting affect epilepsy can have on somebody.
Some people live 'normal' lives whilst having either night or daytime seizures. However, others are less fortunate. A vast majority of young people with epilepsy have another learning disability or indeed themselves become slow learners due to the effect that the seizures have on the brain. If you think; a young girl is having up to 50 seizures a week that would undoubtedly have an impact on her learning. Memory loss, inability to concentrate for long periods and not to mention self-esteem all play a vital part in the learning and development of these young individuals.
So; because of this the Young Epilepsy campus was founded. It dates back way into the early 1800's where it used to be called a be a respite centre for soldiers who developed epilepsy from being at war. Since then they have grown and developed as an almost avant-garde community with its own working farm and living quarters.
I was so lucky to not only be given an all access tour during my stay, but also be completely immersed in the life of somebody with epilepsy. It was an eye-opening experience learning about how there are so many varied ways that epilepsy can manifest and affect somebodies life. Unfortunately, having the condition can come with baggage, in the form of tablets. For most, epilepsy affects different parts of the brain and manifests itself in different ways. As such; each person needs to be treated differently. It can sometimes take years before the right combination of medication is found and even then it's not always 100% right. Some of the young people living at Young Epilepsy site take up to and in some rare cases in excess of 50 tablets a day. Yes; a day. Can you only imagine what that does to the human body? Yes - it may decrease seizures but the other effects of that level of medication can cause havoc with digestive systems, sleep patterns and God knows what else. So thank the Lord for not only modern medicine, but also for the Young Epilepsy campus; because with them these children can be in the best possible environment on their journey to becoming an adult.
If you ever wanted a genuinely good cause to support and get behind, I would without hesitation recommend Young Epilepsy at the drop of a hat. What they provide changes countless lives every single day. From the one on one care at the school and the incredible arts and crafts room (that has been transformed into Narnia) to the medical centre that accurately diagnoses and rehabilitates youngsters with more severe forms of the condition.
There is more goodness pouring out of that small idyllic village than everywhere else I have ever visited. By far the most surprising but genuinely overwhelming week of the Nicest Job so far.