‘Disability is a huge part of my life, but it isn’t all of it,’ says disabled model and campaigner

Kateryna Pemberton was becoming a prisoner in her own home until a children’s came to her aid. Catherine Scott reports.
Kateryna Pemberton who has taken delivery of a £23,000 powered wheelchair which has changed her life PICTURE: Penny HaskellKateryna Pemberton who has taken delivery of a £23,000 powered wheelchair which has changed her life PICTURE: Penny Haskell
Kateryna Pemberton who has taken delivery of a £23,000 powered wheelchair which has changed her life PICTURE: Penny Haskell

Kateryna Pemberton has spent most of her 22 years in a wheelchair.

Kateryna, from Bradford has a rare, degenerative neuromuscular condition – spinal muscular atrophy – which causes progressive muscle weakness and muscle wastage, resulting in the loss of movement.

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The condition means she suffers with joint pain, muscle weakness and extreme tiredness.

Kateryna is hoping to go to university in September PICTURE: Penny HaskellKateryna is hoping to go to university in September PICTURE: Penny Haskell
Kateryna is hoping to go to university in September PICTURE: Penny Haskell

She 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.

Yet Kateryna has never let her disability hold her back and, as well as being a disability campaigner, she is a model .

But she had become virtually a prisoner in her bedroom after her old wheelchair started to cause her pain. She spent five years researching the right chair and almost given up hope. When she did find one it cost £23,000 and her hopes were once again almost dashed.

But this determined young woman was not deterred.

The new £28,000  lchair has been made possible thanks to Children Today Trust PICTURE: Penny HaskellThe new £28,000  lchair has been made possible thanks to Children Today Trust PICTURE: Penny Haskell
The new £28,000 lchair has been made possible thanks to Children Today Trust PICTURE: Penny Haskell
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“I launched a Go Fund Me campaign and wrote to all sorts of companies and I raised around £1,000,” explains Kateryna.

“I also applied for grants from different charities. Some said they were unable to help me and others offered small amounts. I did start to think that I would never get the chair and the independence I so needed.”

In the end she was put in touch with the Children Today Charitable Trust.

“I was worried they only supported children, but they support young people up to 25. I also was told they only gave small grants, but they offered me an amazing £16,000 which meant I could get the chair.

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“The new chair is amazing; I can do so much more and finally get out and about and before the lockdown I was able to socialise with my friends,” she says.

“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 and that really affects your mental health and I ended up on antidepressants.

“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.”

Children Today provides funds for specialised equipment for children and young people up to the age of 25 years old with disabilities, including adapted trikes and car seats.

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The aim of the charity is to enable children and young people with disabilities to achieve their full potential, by enabling better access to education and work and helping to improve both physical and mental wellbeing, as a direct result of the provision of life-changing equipment.

“As you get older, moving from children to adult services, there is so little help,” says Kateryna, who through the Fixers programme has made a short film about disability discrimination.

“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.

“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.

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“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.”

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Kateryna is due to start a degree course at Leeds Becket University in September in public relations and brand communication and she hopes to work in social media.

Disability is a huge part of my life, but it isn’t all of it,” she says.

“I am a real believer in not letting disability stand in the way of achieving your goals.”

As Children Today doesn’t get any funding from the Government or NHS it is entirely reliant on voluntary donations and fundraising events to continue to provide support for children and young people in need, just like Kateryna.

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Founder of Children Today, Hugh McCaw explains: “We know more young people like Kateryna are going to need our support in the coming months as households across the country feel the financial impact of the pandemic, yet we’re worried for the future of our small charity in these unsettled times.

“As we are all undergoing social distancing or self-isolation we realise how hard it is to stay indoors constantly.

“This is the struggle many children with disabilities, and their families, live with on a daily basis. The equipment we fund can help give these children access to a lifestyle that they would never have been able to enjoy previously.

“We hope people will take part in our ‘WorkOUT from Home challenge’ to help us keep changing young lives and ensure the children we support don’t have to wait even longer for the equipment they so desperately need.”

For more information visit www.childrentoday.org.uk

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