Wednesday 25 May 2016

What's Another Word For Inspiration? (Part Two)

So you know I said in Part One, I'd prise Liv's nomination story from her... Well she doesn't know this, (although she may do now), but I didn't have to look very far to find out just what an amazing young woman I was sitting next to. A simple Google search did the job - more on that later.

The one thing that was a brilliant addition to the event, were the presenters. From the cream of UK acting talent, to the cream of our commentary on the cream of UK acting talent. I can't say that it wasn't a little distracting having Steph and Dom from Gogglebox directly in my sight line up to the presenters, but when it was their turn to present, it was genuinely moving to hear of their own experience with the condition, through their son.
The presenters ranged from Beauty Queens, to Comedy and Shakespearian actors, but the one presenter that stood out was a young man in the form of Owen Thurston. He might not be a household name, but incredible in not only helping judge the event, but judging from the position of being awarded the previous year at the Champions Awards in 2015. Quietly determined and self assured, Owen is the kind of guy that you hope any young man will grow into and he's an incredible inspiration to anyone who knows his story. A fundraiser and awareness raiser extraordinaire, he's exhibited the kind of self assurance that someone way beyond his years would struggle to muster. A Rotary Outstanding Young Citizen award winner as well as an Epilepsy Champ 15', he's still only 17.

One thing I know far too fortunately, but more than most though, is that without the medical research to treat our condition, we wouldn't in many cases be able to do the things we do to raise awareness and fundraise doing what we do. Without surgery, I would still suffer 12-15 petit-mal seizures a day and 2-3 grand-mal seizures a week. We're incredibly lucky that we have people who want to make progress with the treatment of epilepsy and they should always be commended.
Treatment however, doesn't always come purely in the science of drugs and treatment of epilepsy in isolation, but the other issues it creates as well. I've talked before about the depression I suffered as a result of taking Keppra, but had I been under the care of Dr Sophie Bennett, it would have been picked up a lot earlier that there was an issue with medication side effects. Sophie is not only treating patients, but further studying for her for PhD at the The Institute of Child Health at UCL as part of the Population, Policy and Practice Programme. Her work is anything but a 'Doctor, Doctor' joke though, she's developed a new way to screen patients in order to assess and treat any psychological issues that our condition so often throws up. She recently published the only review of psychological treatments in children with long-term medical conditions (including epilepsy) to international acclaim. Thankfully she's spreading her good practice wider than just study and training those around her in her treatment of epilepsy as well.

The Inspirational Young Star awards within their respective age categories showed though, that education around epilepsy doesn't stop at study and further education. 12 year old Holly Lumsden, was teaching her own classmates about epilepsy, presenting ideas for her own app for the condition. Something Apple should take note of I would think. But she disclosed her diagnoses of epilepsy so bravely in the process. With the stigma still existing, this takes far more bravery than some would think, especially in the age where social media can be used as a tool for bullying, Holly is looking to take a different approach with technology.
James Bletsoe's approach to his condition, takes more low tech means to get across his intended impact, but it's no less powerful. In fact, what James did, was so powerful, it has meant the start of a Foundation in Art course and an interview for Cardiff University, to study there, despite school being difficult for him and on top of everything else, he had a misdiagnoses of his epilepsy as autism. What James does is far beyond just being conventionally smart, taking his seizures and using them to create incredible pieces of art. I'm sure I speak for everyone when I wish him luck with Cardiff and just hope I can afford one of his pieces if he ever put them up for sale!
Emily Donoghue took the means of words in her awareness raising, not only contributing to globally recognised 'Living Well With Epilepsy', but also writing a blog and now book, to help people make sense on the condition. She's not planning to do this as an exercise in personal income generation however, but rather to raise funds for epilepsy charities. It's clear to see how inspiring it is when she has various different types of seizures, yet is still so open to talking about epilepsy and advocating for people with the condition. As a blogger, her story is particularly inspiring to me personally, to feel that an impact can be made through blogging about our condition, however I'm not quite at Emily's level yet.

And so I come to what was the final award of the night. The Bravery Award. There were three shortlisted nominations which after I heard, I was rather glad I wasn't in the position to have to judge the winner.
Firstly, brother and sister Tiegan and Xander Gill, age 10 and 7 respectively. Their mum Savannah's epilepsy you would think would be frightening for any child to deal with, let alone seeing their mum in such distress. But the kids are so well equipped to deal with it, that they know straight away to phone their dad James if their mum has a seizure, and in the case that they couldn't get a hold of their dad, they would calmly activate the community alarm in their house. Past that, they've even administered Savannah's emergency medication. When I was their age, I could just about make a paper aeroplane and almost keep my Tamagotchi alive, never mind perform crucial first aid to anyone, let alone adding the stress of it being a loved one.
Next imagine the worry you feel about your child starting education of any form away from home for the first time with epilepsy caused by a structural brain abnormality. The worry it must cause for any parent I can only imagine being horrific. But then think if your child, in this case Samuel Owens, had a guardian angel to explain to everyone around him what's happening and to sit with him and reassure him as well. This is exactly what Samuel has in the form of his twin sister Anneliese. But to put this into perspective, Anneliese and Samuel are only old enough to be at nursery school. It's no wonder Annelise's parents were brimming with pride for their daughter. She shows the maturity level of someone ten times her young years, which I can only emphasise by explaining she was the youngest nominee of the night.
Then there was 9 year old Ruby Barnes. Just wow. By this point I was really glad I wasn't having to judge the category, then I heard the story of Ruby's life saving bravery towards her brother, who was in his pram with Ruby's mum Ellen, when they went to pick her up from school to go to Ruby's Grandmother's house. Ellen suffers from epilepsy though, and on that day she had a seizure, next to one of the busiest high streets in Bolton's city centre. Ellen lost control of her baby son and Ruby's baby brother's pram which rolled towards the oncoming rush-hour traffic. Yet 9 year old Ruby, ran back to catch the pram and her brother before it fell into the road, bring it back to her mother who she sat with and reassured as she came round from her seizure, phoning her grandmother to explain what happened and to come and meet them. Diving towards traffic is something most people wouldn't do, never mind Ruby's age and what was happening around her.

I remember thinking how on earth were the panel going to decide who would win the category. But the wonderful surprise at the end of the night, was simply that they didn't and all four of the nominees won the award jointly. 

My special ending happened when I looked for Liv's story online. Partly because my friend Andrew, who's a constant source of inspiration for me, Law degree and all, couldn't make it to the event. I met him through our condition and he never stops inspiring me the way he gets on with his life, even after serious seizures. He's never stopped battling to get a great job and he's got one. But as I later found out, Liv was also studying Law too. I get the impression she's very much like a young version of Andrew, but what really choked me, was that alongside the battling against bullying and comments about her epilepsy, people acting towards Liv as if she's given an easy time if she's ill, alongside the incredible amount she's raised for Young Epilepsy and her work as an ambassador for them, it turned out that not only is she studying Law like Andrew did, she's also doing it at the same University - the University of East Anglia. 

And so you know, Liv's page is here: the moment as I write this, she's nearly hit her £2000 fundraising target. I think we can help her get there and push past her target, because if the Young Epilepsy staff and the Young Epilepsy Champions Awards are anything to go by, it's an incredible charity and it's an incredible cause.

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