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Kats new wheelchair!

£1,270 of £22,584 goal

Raised by 21 people in 5 months
After being diagnosed with Spinal Muscular Atrophy type 2 at only 13 months, my body became weaker and I developed a condition effecting the straightness of my spine, called Scoliosis. The diagnosis was delayed due to moving from my home country of Ukraine to England. From this delay the spinal curvature had now begun to crush my organs, resulting in a depleted lung capacity. After seeing numerous doctors and physiotherapist the decision was surgery. So, in June 2005, aged 8, I had my first spinal surgery to put growing rods in my back, which every year I had another surgery to lengthen these rods. Finally in 2013, aged 15, I had a spinal fusion surgery to have my forever spinal rods put in place. Although I have had my curve corrected, I still suffer with a lot of pain and discomfort in my back and hips.

Although I have had multiple appointments with Occupational Therapists, Social Workers and my local Wheelchair services to try and find a chair which would allow me to be comfortable and independent, it has been incredibly challenging due to my compromised posture.

My current chair doesn’t allow me to live my life to its full potential.  But I’ve finally found a wheelchair which would allow me to sit comfortably for longer lengths of time without being in pain, enhance social interactions and live as independently as possible.

I guess you’re now probably wondering “Well what’s so special about this chair?”.

The Paravan PR30 comes with a verity of complex features and adaptations which will not only allow me to be more independent but will also enable me to independently move and reposition myself without needing assistance.

The chair includes electric seat tilt, electric backrest adjustment, electric hight adjustment, leg adjustment and seat adjustment to name a few.

My current chair has none of these features and results in me having to heavily rely on carers to support and reposition me thought the day!


HOWEVER

*Dun* *dun* *dun*

The Paravan PR30 costs £20,000.00 (The price may alter after my assessment!) which I unfortunately do not have laying around. I would be very grateful if you could donate or simply give this page a share!

Thank you so much for reading my story!
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What difference will the new equipment make to your life and your family’s life? For example, what would you be able to do that you are unable to do now?

It would open up my opportunities greatly and offer me much more independence and be safer to travel outdoors and in situations that are currently extremely challenging. I currently feel unable to make plans and socialise how I would like to, due to issues already raised in question 2. I have had to turn work opportunities down due to my chair not being able to cope with demand, so my opportunities socially, academically and financially would improve substantially.

I feel a chair able to tilt backwards, would enable me to change position regularly throughout the day, minimising risk of pressure sores and relieving back pain that I may be experiencing. This as mentioned is something I currently rely on others for, putting huge pressure on family and peer relationships, being able to position myself would have a huge impact on all around me as I am less dependant on them for positional changes.

Being able to raise my chair and be a lot more visible to members of the public would also make a huge difference as being so low in my current chair I can go unnoticed and can be ‘fallen over’ regularly.

Even things that most people may consider small things would mean such a great deal for me, such as being able to reach things more easily, have the ability to raise my chair to be able to pay for things myself in the shops at the till, be able to access and view things on outings, help in the preparation of my food, walk and exercise my dog a good distance.
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What is life like for you without the right equipment? For example, how do you get around at school or college and at home - as well as playing/socialising with friends?

As a result of my compromised posture, I am unable to sustain a tolerable position. This means I require regular repositioning throughout the day. I am unable to do this independently due to my weakness, therefore I heavily rely on my mother and carers to help.

My current wheelchair limits comfortable positions and due to the time spent in my wheelchair, I have developed a pressure sore on my left arm. My current wheelchair is one which has been provided by Bradford Wheelchair Services. The chair clearly does not meet my requirements, which has forced me to seek help from a private supplier.

Although I have had multiple appointments with Occupational Therapists, Social Workers and my local NHS Wheelchair services throughout the years, to try and find a chair which would allow me to be comfortable and independent, it has been incredibly challenging due to my compromised posture. Wheelchair Services admit that they are unable to provide a suitable wheelchair with the appropriate features that are imperative to me being able to function in the chair.

Without the correct equipment, general life can be a struggle if not impossible. For instance, the chair I currently have is an indoor chair. This causes real troubles when it comes to any outdoor or social activities. My battery has a lower capacity in comparison to outdoor chairs, this effects its ability to hold charge. As it is not intended to be used on long distances, it can run out of charge easily, limiting my social outings.

As I can not plan anything throughout the day as well an activity on an evening etc. For instance, if I had been out anywhere during the day, I would need to go home early to recharge and couldn’t go back out until fully charged. I also cannot go on outings where I would be using my chair for any continuous length of time over approximately 2 hours.

The wheels and motor are unsuitable for most surfaces other than indoors. It has particular problems on gravel, uneven floor surfaces and raised crossings as it it extremely unstable. The wheels themselves are much smaller than an outdoor chair making bumps or kerbs (even lowered ones) a challenge.

I have limited arm movement, so within this chair I am unable to press buttons on outings unless in my direct line of reachable arm height, such as zebra crossings, lift buttons etc, as it doesn’t raise and is quite low. This has put me at risk in certain situations, for example, being unable to stop traffic in order to cross the road and if I try to reach and my arm was to be knocked or fall from my chair where it rests, I would have no ability to pick that back up myself without others physically doing this for me. leaving me vulnerable, stranded and stuck.

I sit in my chair the majority of the day. My current chair has zero tilt functions, is rigid and makes it impossible for adequate positional changes.
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Tell us more about how your disability affects your daily life.

I have a condition called Spinal Muscular Atrophy Type 2. SMA is a rare, degenerative, genetically inherited neuromuscular condition. It causes progressive muscle weakness and loss of movement due to muscle wasting. This causes joint pain, absence of tendon reflexes, muscle weakness, extreme tiredness plus much more and combined with scoliosis limits my ability to mobilise entirely, without the use of a hoist or wheelchair and assistance from carers or family.

SMA has also resulted in the development of Scoliosis (curvature of the spine). The diagnosis was delayed due to moving from my home country of Ukraine to England. From this delay the spinal curvature had begun to crush my organs, resulting in a depleted lung capacity. I had my first spinal surgery to put growing rods in my back, which every year I had another surgery to lengthen these rods. In 2013, aged 15, I had a spinal fusion surgery to have my forever spinal rods put in place.

Although my spine is now straighter, this still causes pain regularly throughout the day and effects my posture, meaning my posture limits me to spending the majority of the day lent forward in my current chair.

I require the help of my carers to execute simple daily tasks, such as preparing food and drink, eating, drinking, all personal cares, getting dressed, medical needs, mobilising, or any form of outings etc. and rely on others to pass me anything I may require, open doors for me etc.
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Hello everyone. I just wanted to say a massive THANK YOU to everyone who has donated so far! We’re £5 away from £100, that’s crazy!! I’m going to try to keep this page as updated as I can. I’m planning to arrange some fundraising events, so please do keep an eye on here and hopefully we should have something scheduled in the calendar very soon! But for now, here’s my most recent YouTube video, which features some footage of me testing the model of chair I’m fundraising for!...
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£1,270 of £22,584 goal

Raised by 21 people in 5 months
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ES
£50
Emma Staples
1 day ago
£1,000
Anonymous
10 days ago
JR
£10
James Robertson
11 days ago
£25
Evie Manning
15 days ago
RB
£10
Robyn Betts
15 days ago
LD
£20
Lisa Dryden
19 days ago
£10
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1 month ago
CD
£10
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2 months ago
£20
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2 months ago
£10
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4 months ago
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