Ellie Darby from Essex is one of a growing number of people in the UK with Spinal Muscular Atrophy Type 2 who are enjoying more freedom and independence than ever before thanks to Precision Rehab, which recently supplied her with a bespoke Piccolino Paravan powerchair.
Ellie’s first love is fashion, and she has refused to let her condition get in her way. In addition to working part-time at a clothing shop, Ellie also volunteers for an autism charity, runs her own YouTube channel and is now planning to launch her very own fashion brand which she says is aimed at bringing more diversity into the fashion industry and is designed for everyone with or without a disability.
Once she has completed her gap year, Ellie is due to begin studying fashion at Brighton University. Having a new powerchair which Ellie knows she can rely on will be invaluable for when she is travelling around campus and will also provide peace of mind for her friends and family while she is enjoying student life.
When she was two, Ellie started using a powerchair for the first time – a day she admits changed her life and since then she has had numerous chairs.
“My condition means my muscles waste away and I have never been able to walk or stand unaided so like many other people with SMA a powerchair is literally a lifeline and without it I am stranded. I’d had my previous powerchair for 10 years and I knew the time was coming for me to change it as it was simply coming to the end of its life.”
Every chair supplied by Precision Rehab is bespoke and tailored to meet the needs of the individual, according to the company.
Matthew James runs the business with his wife Emma. He said: “Ellie had some very specific requirements, we fitted a new back rest which was identical to the one she had on her previous chair along with a swing away lateral support and modified the footplate to ensure it fitted Ellie’s feet.
“To help Ellie control the functions of her chair we fitted a more sensitive switch and for increased comfort we replaced the standard arm rests with Gel Ovations specialist arm rest pads and moved the arm rest closer to the seat”.
Over the years, Ellie has seen first-hand how powerchair technology has evolved and is the first to admit she has never had a chair as advanced as her Piccolino.
“I just love my new chair, it is so comfortable, I have much more room than in my previous chair and the level of seat functions is amazing. For example, I can now slide my seat forward so I can sit closer to a table when working on my fashion brand or YouTube channel or enjoying dinner with family or friends.
“However, the best thing for me is the powered swing away mounting for my controller, for years I have had to ask friends to move it for me but not anymore – these may be little things but they make a huge difference to me as I have never had either before.”