If you’ve read any of my posts before, you’ll probably know that I am a wee bit disabled, as I have numerous medical conditions, one of which is called EDS. I won’t go into loads of detail about what EDS is, but I’ll put a link to an explanation of it here if you’d like some more detail. I have the hypermobility type, but quite severely. All of the joints in my body slip out of their sockets, and I have over 40 dislocations and subluxations a day. This means that most of the time I have to use a wheelchair, or am stuck in bed; but some days I’m doing better and can use crutches or even walk. Unfortunately, I do also have a heart condition which causes seizures, which I also have quite a few of a day (because we still haven’t sorted out the medication for them!) and, as you can imagine, brings about a lot of pain and around 15 dislocations per seizure.
Recently, I reached out to my friends and family asking if they would be kind enough to donate a little bit of money to help me fund a new wheelchair. Being 17, I don’t have the £3000-£4000 that’s needed to buy my new wheels – if I did, I think I probably would’ve moved somewhere like Italy already rather than the cold weather of England. People were incredibly generous, and my GoFundMe page reached its £2000 goal within a month.
As if this wasn’t enough, the lovely ladies that work with my mum organised a charity dinner for Ehlers Danlos Support UK, and kindly said that the money from the raffle could be put towards my wheelchair. Thinking that it would be a cosy little gathering of people, I asked a few of my friends to come along, because I knew they liked curry (and hopefully they also like me). But no. Over 130 people came and we ended up taking over pretty much the whole restaurant. Only a couple of little tables remained, one of which had a grandmother from Spain visiting for her 75th birthday – they probably didn’t get the evening they were looking forward to – but kindly donated nonetheless!
I’d written a speech which I was nervous enough about doing when I thought 20-odd people were coming, let alone over 100. This resulted in a couple of rather large and embarrassing seizures, but I totally think I worked it and no one noticed at all. Just making myself known. I couldn’t even eat my curry – the whole entire point of the evening – because I was so worried.
But when the mic was handed to me, the room suddenly hushed (after a few attempts from to quieten people down, which eventually ended in my dad shouting ‘silence’ like Dumbledore when the troll broke in). I started awkwardly and ended awkwardly, but in the middle, lots of people cried. To be honest I cried but I think that was from nerves and an overwhelming sense of relief that I’d done it, rather than being moved by my own words. Thankfully. I’m not that big-headed.
The raffle went really well, and my dad gave a speech too (also made me cry) and then my friends and I had a mini photoshoot. Everyone that I met on the evening was so kind, and it reminded me of the support that I have around me, even when I don’t know it. The fact that 139 people came – most of whom I’d never even met before – is the reason that yesterday was genuinely one of the best days of my life. I wish that I could thank every person individually, but here’s to hoping that everyone that came has somehow found their way to this blog post. Thank you.
I could go on forever about how grateful I am, but I’ve done that in like four of my other posts, and my speech last night, so I’ll leave it at a dignified thank you rather than an outpouring of emotion that would be me trying to get my point across – which would make you feel more annoyed than thanked.
If anyone from last night fancies supporting my wee little dressmaking venture, please follow me on instagram @hobblinghandmades, or even if you want to order something made exactly to your measurements in the exact design and fabric that you want, feel free to send me a message on whichever social media platform you favour. Or send me a letter if you’re not about that internet life.
In the meantime, here are some photos of me having a grand old time last night: