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Help Shona Get A New Powerchair

£11,540 of £11,500 goal

Raised by 512 people in 8 months
My name is Shona, I'm 20 years old, I live in the UK and I have a rare genetic condition called Marfan Syndrome. Marfan is a connective tissue disorder that can affect the whole body, everything from the heart to your skeleton, the severity varies within people and unfortunately I sit on the more severe end. I've had 3 major surgeries including spinal fusion and a hip replacement just in the last 4 years and I face having more spinal, hip and major open heart surgeries in the years to come. 


I use a powerchair to get around for many reasons but the biggest being that there is a large cyst sitting at the bottom of my spine, eroding away bone and causing me a significant amount of chronic pain. Walking even a few metres is incredibly painful and I'm unable to propel a manual wheelchair so using a powerchair is the best way for me to get around and it's allowed me to continue enjoying life. 

I've only been using my current powerchair for just over a year but my health has declined so severely and so quickly that it is already unsuitable, it's been unsuitable for over 6 months. My current chair is causing me pain and is limiting me greatly so it has become necessary to upgrade. I now need something that has tilt and recline functions, since the only thing that relieves my pain is laying down. When I'm sat up after just 30 minutes my pain can often be so severe that it leaves me in tears, making my trips out the house often short so having these functions would allow me to spend more time with family and friends. I also suffer with chronic joint pain and joint dislocations so I need a powerchair that is as comfortable as possible, something with good suspension so I don't feel every bump in the ground.

Unfortunately NHS wheelchair services won't help me due to the fact that I'm able to walk a few metres inside my home on crutches, but they also do not have a powerchair that is both suitable for me and will comfortably fit both inside my home, which has a verge narrow front door.

A new powerchair would mean that I could spend more time with my family,  I miss out on spending time with them and my 1 year nephew in particular. I often struggle to even sit up and eat a meal with them.

For so long I've been using an unsuitable powerchair and the idea of having something that fits me, that is ideal for me, makes me so emotional as I think of all the things I'll be able to do and achieve. I often feel cut off from society, stuck inside my home laying down all day to try and control my pain but finally freedom feels like it's just an arm's reach away and I would be so grateful to anyone that can help me get back some of my life again.

The powerchair I'm looking to get is the Quantum Q6 Edge 2,0. The goal includes covering the fees that GoFundMe take from donations. Sadly I don't have any savings and I'm unable to work so this isn't something I can fund myself. I also cannot use my PIP high rate mobility as I'm hoping to learn to drive next year so I'll need to use that to get a wheelchair accessible vehicle on the motability scheme, something that would also give me heaps of independence as I currently rely on unreliable and often inaccessible public transport.

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It's been over 6 months now since this fundraiser began and I am very happy to share with you all the news that I have my new powerchair! I honestly thought that it would take me a year to raise the money, so to raise the money and receive my new powerchair all in the space of 6 months is incredible!

This update is a little delayed, I received my new powerchair about a month ago now and I've been so busy enjoying my new freedom and independence that I forgot to update the page! I've of course been talking about it across my social media but for those of you who have only been following through my fundraising page, here's a little about how this past month has been!

With my old powerchair I was only leaving my home once or twice a week, with each trip out being incredibly painful, often leaving me in tears and feeling faint. Those days are gone though because now I've leaving my home about every other day, for trips as small as going to my local shop or as big as heading into London. Sure, I'm still in pain when I'm out and I suffer for these trips in terms of chronic fatigue and pain but it's bearable pain and bearable fatigue and that's all down to the electric functions on my powerchair.

Being able to drive tilted back is doing me so much good, it takes longer for my pain to build up and when it does, I can just find a quiet corner to fully recline for a while, and then I'm off again!

I've taken up swimming in recent months, with my new powerchair making it possible to go once or twice a week, rather than once a fortnight. I also took my Mum to see Les Mis in London last month, something I've promised her I would do for years. She cried from start to finish, we made some amazing memories that day. Memories that wouldn't have been possible this time last year.

I've realised how much of life I was missing out on previously, I've got a lot of catching up to do that's for sure! I'd told myself that I didn't care about missing out on things like drinks with friends and trips out with my family, but I can see now that I definitely cared, telling myself that I didn't was just my way of coping.

This isn't a miracle, I'm still not able to work and I still need support from other people to do things, but my powerchair is enabling me to be as independent as is possible for me and have the freedom that most 20 year olds have. It's a fine balance, I'm having to learn my limits all over again and pace what I do, I've pushed myself too far several times and paid for it in pain and fatigue, but there is so much to explore now. It feels like a fresh start.

I can honestly say that I'm the happiest I've ever been. There are no words in the dictionary that could ever express my gratitude to everyone who made this happen but from the bottom of my heart, thank you for changing my life.

You can read more and see some photos on my blog here: http://www.shonalouise.com/2018/02/say-hello-to-my-new-powerchair.html
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This photo shows the effect of sitting in my current powerchair for just a few hours. I cracked the other day and cried for the first time in ages due to pain. The bus journey home after being out with family was hell, I wanted to scream. I can’t keep putting my body through this so I’m going to have to limit myself to only necessary trips out, to hospital appointments and to the local shop. I’m 20 years old, that’s not how I want to live my life but equally I can’t keep doing this, my body can only take so much.
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Yesterday I had my final demonstration of the powerchair, to finalise all the details. Now we’ve raised 50% I can order the chair and it could be ready as quickly as 4 weeks after ordering, although the estimate is 4-8 weeks. The only problem is, they can’t hand over the chair until I’ve paid in full so once it’s ordered, which will be happening soon, we will only have about 2 months to raise the remaining amount.

Now I could delay the delivery date, although only for so long, but I cannot delay ordering because this money counts as personal savings and will soon bring me up to the max amount of savings I can have whilst on ESA so I need to order ASAP before I reach that point. Also, as my powerchair rep said, once the chair is ready we all want me to access it because we can all see how important it is that I get it ASAP. Trips out the house are few and far between and they are getting shorter too, so we really do need to raise the rest of the funds as soon as possible.

Keep sharing the link, spreading the word! We need fresh eyes to see this now! As always I’m so grateful for everyone’s support in getting me to this point!
Photo of me in the demo chair.
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Help Shona Get A New Powerchair has reached 50% of its goal! Thank you so much to everyone who has got me to this point! I can now order the powerchair! The hard work really begins now as we begin to raise the second half of the funds so please keep sharing! The second half will be much harder to raise.
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£11,540 of £11,500 goal

Raised by 512 people in 8 months
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£10
Anonymous
5 months ago
£10
Lauren Chassebi
5 months ago
BW
£10
Bethany Woods
5 months ago
AK
£5
Amy Keeling
5 months ago
£890
Anonymous
5 months ago
£5
Anonymous
5 months ago
£5
Anonymous
5 months ago
SS
£15
Stephanie Stamp
5 months ago
SD
£50
Sophie Davis
5 months ago
JM
£1,500
Jojo Moyes
5 months ago
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