Sixteen-year-old Alice Lee has the rare CASK gene mutation which affects every aspect of her life including her mobility. She uses a wheelchair to get around but is now developing scoliosis so needs a standing frame to help prevent further curvature of the spine.
She is strapped into the standing frame from a horizontal position, and then moved upright, which means a hoist is also needed. Together, these two pieces of equipment take up a lot of space – space which the family doesn’t have in their South Normanton home in Derbyshire.
However, there is space at her school across the county border in Nottinghamshire where she can use the stander – but statutory services do not issue equipment for use outside of their catchment areas.
Mum Joanne Lee said: “We could have had the equipment installed at home, but we don’t have enough room. It made sense for Alice to have it at school, where she can use it every day she is there. However, this wasn’t possible. Different agencies spent a year trying to sort out the problem – during which time Alice’s condition deteriorated. In the end, Newlife the Charity for Disabled Children came to our aid, funding and installing a specialist frame for Alice at Fountaindale School, where they already have the necessary hoist.”
Joanne added: “Alice has used a different standing frame at school in the past but her physical abilities have changed so she now needs a bigger, heavier model that the school didn’t have. Alice finds it very difficult to stand straight without support so having the opportunity to use this equipment is very important in managing her condition. Not only that, but she loves being in it.”
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness and has provided £343,370 of equipment for 394 under-19s in Derbyshire. Equipment ranges from wheelchairs and buggies for mobility to specialist car seats and beds for safety.
To find out more about how Newlife supports children in the county, go to: www.newlifecharity.co.uk/derbyshire.
Right now, the charity is working with a further 23 families in the county with equipment needs totalling £7,371. If you think you could help a local child, go to the website and click on the Donate button. The website also includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email email@example.com – and shows specific ways people can help support children with disability and terminal illness and their families in Derbyshire.
Pictured: Alice Lee