Standing Wheelchair - I Dream To Rise And Stand

Please Help Me Raise Money For Standing Wheelchair, Anything Helps, Here's My Story Below

I’m Catherine, I'm 36 and I have a rare Neuromuscular Disorder called Selenon related Multiminicore Disease with Rigid Spine Syndrome. I’m trying to fundraise for a 24k standing powered wheelchair to give me back my independence, open new doors and to rise and stand on my own two feet. In my life, I have never asked for help with money and I have tried to lead an active life; I went to two universities and I have two degrees (Bachelors and Masters) but despite my activity my condition has progressively gotten worse; I have walked for over 30 years but my balance and weakness has caused so many falls that I had to give in and use a manual wheelchair, I am now wheelchair dependent with not much independence. My parents have 4 children, 3 of which have the condition. My eldest brother Ewen, tragically died when he was 21; he lived his life to the fullest with independence, gaining a statistics degree, driving his own car and I hope to gain that level of independence with this new wheelchair.

The wheelchair I currently have is an attendant push wheelchair so I can’t move independently. Wheelchair services can only give me a chair with one adaptation and in the end the smallest wheelchair doesn’t fit in my house, nor can I see the display so I’m forced to purchase privately; they also don’t have a voucher scheme or wheelchair budget. I wish to buy a standing wheelchair because despite the fact I can’t walk anymore, I can weight bear and being able to stand on my own two feet is something I still dream about and desperately miss. I used to stand all the time at gigs or in my living room watching TV, and in some cases it was more comfortable to be able to stretch straight, than being crumpled in a bad seating position. Standing feels good to me and being able to do this independently would change my life.

It’s not just about standing, I need a wheelchair that will tackle my symptoms exacerbated by not being in the right chair and cover future problems. My disease primarily causes muscle weakness and fatigue along with spinal rigidity. I also have respiratory problems so I have night-time ventilation. A more sedentary life has exacerbated existing circulation problems, peripheral neuropathy, muscle and nerve pain. If I’m being honest not being able to move independently in any direction has affected my mental health and left me frustrated that I can’t do certain things that could be done if I had a power wheelchair with the right adaptations.

Currently everything is done by my parents and other carers. Having a power chair that can drive, stand, rise and tilt would help me move independently and maximise my independence which I’ve lost but also give respite to my parents. It will help maintain strength in terms of weight bearing and with symptom management such as pressure sores, circulatory problems and leg oedema (swelling). The seating will give me better postural control and maintain the best position for my condition; this in turn will reduce pain and pressure on my bottom, legs, arms and head.

The wheelchair I’m seeking is a Baldertech F290 Stand, Rise and Tilt wheelchair which I have already tested out and been measured for; it is at a cost of £24,807 (excluding insurance and extended warranty). I have managed to acquire some grant money, which means I have 20k to raise. This chair I hope with all the adaptations will see me far into the future and open new doors for me. If I get this chair, I intend to buy a WAV and will definitely be going outside more. Indoors independently I’ll be able to have dinner with my family again, I’ll be able to play the piano, watch tv with my family on my own steam, I can go to the kitchen and make a cup of tea myself; a lot of positive changes will happen. Anything that you can give would help towards this cost and I will be forever grateful if you could help me claw back my independence.