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Hi! My name is Marley-Belle and I love life. Unfortunately, I suffer from a debilitating disease (more on that later) that has left me bed bound and in considerable pain. Whilst my day to day life has changed dramatically, I try to remain positive and focus on my friends and my beloved dog, Bootstrap.
My disease is rare and most commonly found in African American men in their 20’s (I’m white, British and I was in my 30’s when it was diagnosed) called Ankylosing Spondylitis. In layman’s terms it means that the vertebrae in my spine are knitting together with an overgrowth of bone. There are already solid blocks of bone in places and eventually my whole spine will become like a rod.
Houston, we have a problem...
This illness has been a slow process. It initially started as an inflammation in between the discs (which are the jelly parts in between the vertebrae of your spine) and then the joints and muscles of my spine become massively inflamed too causing me to go through excruciating pain for months. Over time this has developed into something that specialists call ‘bamboo spine’ which is where my body tried to heal the inflammation, but instead of doing that my body grew extra bone over the discs and vertebrae. This caused a literal fusion of the spine. The worst part-there’s absolutely nothing they can do.
However the Ankylosing Spondylitis hasn’t ended in my spine, it has also gone on to affect my fingers, pelvis, knees, toes, ankles, one shoulder and my eyes.
Looking for signs of life
Day to day I am in an awful lot of pain, but I try to focus on the positives in life. In the earlier stages of my condition I was still managing to get out in my old power chair, exploring the world, spending time with friends and going to the doctors independently. Unfortunately, as my condition has worsened the chair I currently have is not fit for purpose and does not allow me the freedom I once had. I cannot simply go out and do what I was able to do without considerable help from my carers.
Recently a flare up of the Ankylosing Spondylitis caused me to contract Pneumonia. This meant I ended up in back in hospital for another 6 weeks on the high dependancy respiratory ward. It was there that I discovered my condition has worsened and left me needing a custom wheelchair to help support my body and give me back some independence.
The NHS do an amazing job and have looked after me so well but with waiting times only on the increase, to be seen by consultant and assessed for a fit for purpose replacement let alone one being delivered, I have had to look elsewhere to try to regain some freedom.
‘I don’t wanna miss a thing!’
With every second of my life ticking by I don’t want to miss out on any part of it while I’m as able bodied as I am. I don’t know what the future will bring me but I just want to seize things whilst I have the opportunities and lack of fear too!
I have been in contact with a private wheelchair company called Gerald Simonds Healthcare Ltd and I have spoken with someone who could fit me with a power chair, which means it would be electric so I could get around by myself with no need to be pushed, I would be completely independent again (the thought of it alone makes me so happy!) he has given me two chair models that they may start and base it on then they would make adaptions onto that which they are estimating to cost £10,000 plus. I will need a lot of specialise features to manage some of the deformities I now have and to also keep me comfortable when I use the chair because of the pain this condition causes. The two makes of chair are;
An Invacare TDX SP
A Sunrise Salsa M2
Being away from work I simply don’t have that kind of free income, I’ve worked hard in the past and wish I could work again now. I miss it, my colleagues and of course, the customers so much!
So, what would your donations do?
Your donation would mean I could have a brand new Power Chair (or Electric Wheelchair as they are sometimes called) with the body of one of the two chairs I have listed above and some adaptions;
- A tilt and recline feature so that I can reach things out of cupboards and off the higher shelves in shops, it is also useful for changing my position if I have been sitting for too long because this can lead to pressures sores and I plan on being in the wheelchair, if I am lucky enough to be gifted it, for a significant portion of the day!
- A cushioned side panel sculpted to fit the curve in my spine to prevent my sideward slope over to the right hand side, therefore making the wheelchair safe to use.
- Individual, padded leg rests, measured and built to fit the deformities of my legs entirely. Each leg rest would be able to go up and down in fractions separately, so as my physiotherapy progresses-my wheelchair can too!
- The choice of a left or right hand gear stick. (I’m ambidextrous)
- An independent, adaptable, luxury headrest to maximise comfort to keep the chair in line with my spine, not force my spine to be straight. This will also be great because I have a hunch in my cervical (meaning top part of) spine, this leads to a head droop which can cause neck aches and headaches in the past because headrests haven’t been supportive enough.
- Brand new batteries with a warranty for extra peace of mind. That way, if I break down I’m covered and I can be picked up wherever I am!
My life would change immeasurably if I were able to be in the Wheelchair I so desperately need. I’ve forgotten what the outside world looks and sounds like. Your donation is giving me the chance of freedom again. It means I can be a normal 34 year old girl and go to a coffee shop with my dog, Bootstrap and a friend, or catch a train into the city, I could go and watch a film at the cinema-these are things my hopes and dreams are made of and I thank you sincerely for even considering my cause.
The hard reality I have to face every day is that my condition is degenerative, at the last MRI Scan it showed that my spine has now started to crumble away and my specialist and I are now in discussion about starting a biological method of pain relief which would mean injecting myself, just to keep comfortable. I’m hopeful that these are long term plans, but I didn’t expect to end up bed bound at 34 either. I take pleasure in such simple things, that the day I can get out of my front door will be like getting to the moon for me.
‘That’s one small step for man, one giant leap for mankind.’
Thank you so much everyone, your help is appreciated so very much. If you can’t help, some encouraging words are just as wonderful to me!