Sixteen-year-old Isaac Hall is in the advanced stages of the rare and debilitating condition Hunters Syndrome. His family need specialist equipment to help care for him at their home in Harvington, Worcestershire – and life has just been made a little bit easier with the delivery of a safe sleeping environment for Isaac.
He had been in an ordinary bed, but this became too dangerous. Mum Katie Hall said: “Neurologically he has recently gone downhill, fast. Once a week, at school, he uses a standing frame to help improve his body’s circulation, but then he thinks he can still stand independently – whereas, in reality, he can’t even get into his wheelchair without support. So he would try to get out of bed – and fall flat on his face. We were so worried for his safety.”
Involuntary jerking movements are also a consequence of his condition and Isaac was at further risk of hurting himself on hard surfaces. The family were able to temporarily borrow a special-needs floor-level bed from the respite centre Isaac attends, but they needed permanent provision – so applied to Newlife the Charity for Disabled Children for help.
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness – and has supported Isaac in the past.
Dad Andy said: “We prefer to buy equipment for Isaac ourselves, but there is a lot of it and it is all expensive. Some things are available through the local authority, but we still have to source a lot of things personally.”
Isaac’s occupational therapist recommended a specialist fully-padded, high sided bed that can be raised and lowered. The equipment comes with a price tag of £7,190.
With support from retail fashion store chain River Island, Newlife fast-tracked the grant and the equipment was delivered at the beginning of May.
Katie and Andy said: “It’s fantastic. Isaac feels so much safer in his new bed – and we know that he can now be left on his own in his room, without fear of him hurting himself. It is a huge weight off our shoulders.”
The River Island funding comes from the sale of in-store carrier bags. The profit from the sale of every five-pence bag – in every store across the UK – is donated to Newlife, specifically to fund vital equipment. This fantastic plastic initiative has so far resulted in more than £500,000 for the charity.
Newlife CEO Sheila Brown, OBE, said: “As local authority budget cuts continue to bite, more and more families are turning to charities like Newlife for specialist equipment which can have a significant effect on young lives. Having the national support of River Island is an enormous boost for us.”
To find out more about how Newlife supports local families through a range of equipment services, go to: www.newlifecharity.co.uk/worcestershire. Newlife has supported 198 children in the county, with equipment totalling £336,331. The charity is currently working with a further five families in Worcestershire, with equipment needs totalling £12,716.
If you think you could help a local child, go to the website and Donate. Alternatively, contact the Newlife Supporter Relations Team on 01543 431 444, email email@example.com. Newlife guarantees that 100 per cent of monies donated or fundraised in Worcestershire will be used to specifically help local children with disabilities and terminal illness.
Pictured: Isaac Hall