I’m Shona – you probably know me from my disability posts on SMB – and I need your help. None of us like asking for help but sometimes it’s necessary and right now if I don’t ask, I will become housebound.
I have a condition called Marfan Syndrome that affects my whole body, everything from my heart to my skeleton and in the space of 4 years I’ve had 3 major surgeries, including a hip replacement at the age of 18 and there are many more surgeries ahead. The biggest issue is that my condition has caused me to develop a large cyst at the bottom of my spine that is eroding away bone and every time I sit up, even if it’s just for a few minutes, I get severe chronic lower back pain that has left me only able to walk a few steps on crutches, so I rely on a powerchair to get around. My current powerchair is basic though, it’s basically a car seat on wheels. It’s seat is uncomfortable and it has none of the functions or support that I now require, it can’t be adapted either. My health has declined so quickly in the past year that it become unsuitable quicker than expected and now I’m left needing something far more specialised.
NHS wheelchair services, a system that is supposed to help disabled people, have strict rules though, because I can walk a few painful steps on crutches they’ve said they won’t help me. This is happening all across the UK and thousands of people like myself are left having to fundraise for costly pieces of equipment. I’ve got a big sum to raise for a powerchair that has electric functions like tilt and recline that will allow me to relieve some of my back pain, this will mean that I can spend more time outside of my home, with family and friends. Right now I spend 90% of my time laying on my bed, as that’s the only thing that makes my pain bearable. This new powerchair will be able to fully recline, almost like a bed on wheels so in theory I could spend all day outside of my house, depending on fatigue. I also need things like specialised seating and personalised changes to accommodate my long legs, it all adds up unfortunately.
This powerchair will open so many doors for me, I might even be able to return to some kind of education again (I had to leave school after my GCSEs) but most importantly I won’t be housebound, that’s where I’m heading if I don’t get a new powerchair. I’d be so grateful for anything you can do to help, even just a RT!
Donate to Shona’s GoFundMe page here.