Little Kian Bailey is one of two children in Nuneaton, Warwickshire, currently being supported by a charity’s emergency equipment loan services . . .
The emergency loan of a specialist buggy means Nuneaton mum Claire Bailey can get one-year-old Kian – and all his vital medical equipment – out and about in the local community.
Kian has Spinal Muscular Atrophy combined with Respiratory Distress; his condition led to him being airlifted to hospital at just eight months old and he spent many weeks there, requiring a tracheostomy to help him breathe.
Claire said: “Kian has to have a lot of equipment, wherever he goes; there’s his ventilator, suction unit, emergency bag and Ambu bag (self-inflating resuscitator). He also needs oxygen if he has a chest infection. It’s very difficult to get this equipment on a mainstream buggy, safely.”
When her son was being prepared for hospital discharge, and Claire was able to take him out in his standard buggy for short walks, nurses would go with her to carry all the equipment. But it was obvious she wouldn’t have this sort of support once Kian had left hospital care.
She said: “I was told Kian wouldn’t be eligible for a specialist buggy through statutory services until he was three – so his nursing team referred me to Newlife Foundation for Disabled Children.”
Newlife is a leading UK children’s disability charity, based in Staffordshire. Through its Newlife Nurse Helpline – freephone 0800 902 0095 – it provides a range of practical support services for disabled and terminally ill children and their families.
Kian has been helped through Newlife’s Just Can’t Wait emergency equipment loan service. It offers loans of specialist wheelchairs, buggies, beds, seating and portable hoists to families of terminally ill and life-limited children – aiming to deliver the equipment within 72 hours.
Newlife then works with local statutory services to secure provision of this equipment through public funding; if this is not possible, the charity looks to make permanent provision through an Equipment Grant.
In 2013/14 alone, Newlife awarded 1,303 Equipment Grants to families across the UK totalling £2,088,105. Equipment included specialist beds, buggies and car seats; stair climbers, safe environments and communication aids; wheelchairs, standing and walking frames.
Demand across Warwickshire for all of Newlife’s practical support services has risen sharply over the last year, so the charity has appointed a regional Awareness and Fundraising Manager to help ensure continued support for families of disabled and terminally ill children in the county.
Keleigh Tomlinson said: “Individuals and groups I work with on a daily basis are delighted that 100 per cent of their donations/fundraising goes directly to buy specialist equipment for children in need – and they can designate which county their money is used in. Because of the charity’s transparent accountability I can tell everyone exactly how their funds have been spent.”
Keleigh is keen to hear from any local individuals, social and community groups or business organisations which might consider supporting Newlife Foundation in Warwickshire, either through fundraising or volunteering activities. She can be contacted on 07973 473 268 or by emailing email@example.com.
For full details of Newlife Foundation’s range of practical support services for disabled and terminally ill children and their families go to:
Pictured: Kian Bailey.