The UK’s largest charity funder of children’s disability equipment is calling on people across Manchester for their help, as the number of families who urgently need vital equipment has reached an all-time high.
Newlife Foundation for Disabled Children CEO Sheila Brown, OBE, said: “We are currently working with 22 families in Greater Manchester who all urgently need specialist equipment. The need currently stands at £32,948. And we are continually receiving new applications.
“The equipment they need is all vital for their children’s everyday lives – and the situation will only get worse as statutory services narrow the range of support they offer.”
Newlife is the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness. Demand on its resources has increased by 26 per cent in the past 12 months.
Sheila added: “Newlife works with hundreds of national retailers and manufacturers to operate its own successful recycling and retail business which funds core services, however we have received more applications for vital equipment from desperate families than ever before. I am worried that, with demand continuing to rise, we may not be able to help every child. Public support has never been needed more.
“For many the right equipment at the right time not only relieves pain and isolation, it helps prevent long-term deterioration and enables children to make the most of life’s opportunities. In some cases, the equipment we provide means that children can be discharged home from hospital and into the care of their families. For others, having a hi-tech wheelchair means they can continue with their education or specialist supportive seating gets them out of bed and back at the heart of family life.”
She added: “I know this is a busy time for families as they start thinking about the festive season, but I am urging Manchester Evening News readers to spare a minute to consider how they could help improve a disabled child’s life this Christmas. All fundraising and donations can be restricted to help change the life of a disabled child in your county. And we let everyone know how their money has been spent.”
Newlife has provided specialist equipment for 426 children in Greater Manchester, at a cost of £358,027. As well as awarding grants, the charity also works with families to offer Emergency Equipment Loans, often within 72 hours of an application being made, a Play Therapy Pod service for those with complex needs and Comfort Capsules so families of terminally ill children can make memories together.
To find out how the charity supports families in your area, go to www.newlifecharity.co.uk/greatermanchester. You can donate to your County Fund through the website, or alternatively, contact the Newlife County Liaison Team on 01543 431 444, email firstname.lastname@example.org.
Two children in Greater Manchester who are currently being supported by Newlife are two-year-old Evie Appleyard from Stockport and teenager Lloyd Griffin from Cheadle Hulme.
Evie, from the Woodsmoor area of Stockport, has a rare life-limiting undiagnosed neuro metabolic condition which has resulted in developmental delay, epilepsy and a visual impairment. She has spent five months of her life in Manchester Children’s Hospital.
Mum Christine Appleyard said: “It would have been a lot longer if it wasn’t for Newlife. The organisation has provided us with several pieces of specialist equipment vital in helping us care for Evie.”
Earlier this year Evie suffered a major seizure and, since then, her development has regressed. “When we were due to come out of hospital we knew we needed additional support, and Newlife stepped in,” said Christine.
Evie has low muscle tone and no head control, so a specialist car seat was provided just so she could make the journey home. Weight gain since then has seen Evie develop and grow out of the initial car seat – so Newlife has provided a second, larger seat so parents Christine and Mark can continue to take Evie to her many hospital and clinic appointments.
Too poorly to be safe in a standard high street pushchair, she also needed equipment with additional postural support to get her out and about and Newlife has provided this – together with specialist seating for the family home – through an Emergency Equipment Loan.
Fifteen-year-old Lloyd has a degenerative condition called Spinal Muscular Atrophy and he relies on a wheelchair for mobility. His NHS wheelchair is so uncomfortable that he frequently has to miss lessons at Cheadle Hulme High School and go home to lie down to ease the pain. With the aid of charity supporter Marks and Spencer, Newlife is now helping to provide a specialist wheelchair that will enable him to go on to college to further his education.
Lloyd said: “Having a new hi-tech chair will not only mean I will be comfortable sitting all day but that I will be able to socialise more and continue on with my education at college next year where I want to study a Btec in Sport to fulfil my ambition to become a football coach.”
Mum Sue Griffin says: “Lloyd’s wheelchairs have been privately funded in the past, but we 12 months ago we thought it was about time we went down the NHS route. Unfortunately they can only provide a standard wheelchair and Lloyd has quite specific seating needs. As a result he has been uncomfortable ever since – he has metal rods in his spine to help keep him straight and these cause him a lot of pain when he is in the wheelchair and I am constantly having to pad out the lateral supports so he stays upright.
“We have found that the wheelchair isn’t very stable either, so this, combined with the lack of comfort, means Lloyd has been very reluctant to go out with his friends.
“He has missed a lot of school because he can’t sit in the chair all day – he has to come home early and lie down to help relieve the aching. That’s never been a problem with previous wheelchairs.”
Lloyd’s new hi-tech wheelchair will have adaptable integrated support, an electric footplate so he can stretch out his legs to relieve pain and a riser facility so he can talk to his friends and family on the same level.
Pictured: Evie Appleyard
Pictured: Lloyd Griffin