Kateryna has a rare, degenerative neuromuscular condition – Spinal Muscular Atrophy – which causes progressive muscle weakness and muscle wastage, resulting in the loss of movement. The condition means she suffers with joint pain, muscle weakness and extreme tiredness. Kateryna, aged 22, also has scoliosis which further limits her mobility and means she requires the use of a hoist or wheelchair and assistance, making her entirely dependent upon her mother and carers.
Kateryna, who lives in Bradford, says: “My new chair is amazing; I can do so much more and finally get out and about! My previous chair was in one position all the time and caused me a lot of pain, which meant I often had no choice but to stay in bed. With this chair, I am able to recline and tilt it and it allows me to stretch my legs; it’s much more comfortable so I can get out of bed more.
“The NHS couldn’t tailor anything for me, so I applied to Children Today for funding. As you get older, moving from children to adult services, there is so little help. I had written to four other charities and I also tried to fundraise myself, with little success. I don’t know what I would have done if I hadn’t got the funding. I dread to think where I’d be without the new chair. The chair should last at least ten years or so, but I know people who’ve had the same chairs for 15 years or so.
“I have issues with my spine and hips, but the new chair has significantly reduced my pain. I am more independent, and I can now sit and eat with my family. The chair can be raised, so I can be at eye level with everyone and see my friends and family better in social situations. It’s enabled me do things that other people probably take for granted. For instance, I can now go shopping and try stuff on, which I couldn’t do before.
“The battery on the old one didn’t last very long, so I was always worried. Now I’m not worrying about being uncomfortable and I’m less reliant on other people. I’m regaining myself and it’s amazing not to be confined to the bedroom. It’s really helped with my mental health. It was very lonely being stuck at home but now I feel like I can be myself.”