The rising number of calls for help from families of disabled and terminally ill children in Derbyshire has prompted a leading UK charity to recruit an Awareness and Fundraising Manager specifically for the region.
The new role is vital to the work of Newlife Foundation for Disabled Children to help ensure continued support for families of vulnerable children such as three-year-old Zach Blackburn from Chesterfield.
Zach has a diagnosis of Autism, Global Developmental Delay and Hydrocephalus. He also has a benign brain tumour and an undiagnosed genetic disorder.
Mum Jamie Isherwood said: “Zach’s prognosis is uncertain, which makes getting support exceptionally difficult. We have a fight on our hands to get specialist equipment.”
Until recently, Zach was sleeping in a standard baby cot – but he is tall for his age and kept banging his head on the sides and getting his limbs trapped between the rails. “He dislocated his elbow one night,” said Jamie, who was also concerned that he might tip over the side of the cot.
In April this year Zach had surgery to implant a feeding peg into his stomach; now he needs to lie at an angle of 30 degrees so he feeds safely. Concerned at how she would be able to manage this on a nightly basis, mum Jamie contacted Newlife Foundation for help.
Through its Emergency Bed Loan service, Newlife provided a £7,267 specialist high-low profiling bed with high padded sides so he can’t hurt himself or be at risk of toppling out.
Jamie said: “Zach needs somewhere safe to sleep and this bed is perfect; without it we were in a terrible situation. Now he can be fed safely throughout the night; as a result this has sparked his appetite and he is starting to put on weight and look healthy.
“The bed has made a massive difference, not only for Zach but for me too. The first night he had it was the first really good night’s sleep I had had in a long time.”
Zach’s equipment was provided through Newlife’s Emergency Bed Loan (EBL) service which helps children sleeping in unsafe environments, have life-threatening conditions or are in need of additional support to leave hospital. It offers six-month loans of equipment, delivered direct to families’ homes.
Newlife Equipment Loan Service Manager Carrick Brown said: “The six month loan period gives us time to work with local statutory services to explore avenues of public funding for long-term equipment or – if this is not successful – provide it ourselves through the Newlife Equipment Grant service.”
Newlife Lead Nurse Karen Dobson added: “Specialist beds cost thousands of pounds each but they can transform the lives not only of the children concerned, but offer much needed respite for carers.”
EBL is just one of a range of practical support services for families of disabled and terminally ill children, all accessed via the Newlife Nurse Helpline – freephone 0800 902 0095 or email nurses@newlifecharity.co.uk.
Demand across Derbyshire for all of Newlife’s 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.
David Reeves, who joined the charity this summer, said: “What attracted me to Newlife Foundation is the guarantee that 100 per cent of all funds donated or raised go directly to buy specialist equipment for children in need. People can designate which county their money is used in and because of the charity’s transparent accountability I can tell everyone exactly how their funds have been spent.”
David is particularly keen to hear from any local individuals, social and community groups or business organisations which might consider supporting Newlife Foundation in Lancashire, either through fundraising or volunteering activities. He can be contacted on 07854 425 273 or by emailing dreeves@newlifecharity.co.uk.
He added: “The work of volunteers is vital to Newlife’s ability to be able to grow in line with the demands made on its resources.”
Pictured: Zach Blackburn
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