Families of more and more disabled children across Staffordshire are increasingly turning to leading UK children’s disability charity Newlife Foundation for grants to fund essential pieces of specialist equipment.
Newlife CEO Sheila Brown, OBE, said: “Our equipment grants are so vital to so many children, offering practical support to families in need. Equipment can range from pain-relieving beds to specialist car seats, from wheelchairs to therapy aids. Equipment that costs from hundreds to several thousands of pounds really can revolutionise a child’s life.”
Last year, Staffordshire-based Newlife awarded £1.2million in equipment grants to children throughout the UK – including 45 in Staffordshire totalling £64,606. This brings the total value of equipment funding in Staffordshire to £549,816.
But Newlife is experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 – have shot up by 73 per cent compared to the same period last year. This is an average of 300 calls a week, with thousands more hits on the charity’s website www.newlifecharity.co.uk
“With cutbacks to budgets across all statutory services, it would seem that it is our most vulnerable children who are losing out. Newlife is determined to help as many disabled and terminally ill children – and their families – as possible, and is increasingly calling on the support of volunteers and donors.
The Newlife Community Fundraising Team can be contacted on 01543 462777 or 0800 988 4640.
Newlife needs around £500,000 to meet the immediate needs of disabled children around the UK, with £37,628 of this for 16 children Staffordshire.
The charity aims to help those children who would otherwise go without essential pieces of equipment because statutory services have declined funding.
Among the region’s children currently applying for equipment grants are Robert Brassington, aged 15 from Newcastle under Lyme, Zaynah Fatima, aged four from Stoke on Trent and Abigail Evans, aged three from Hanley. Here are their stories:
WHEELCHAIR APPEAL TO ALLOW ROBERT, 15, TO JOIN IN FAMILY FUN
Disabled teenager Robert Brassington needs a specially adapted powered wheelchair so he can join in more family outings.
Robert, aged 15, has no independent mobility and is a full-time wheelchair user. Hearing and visually impaired, he has neuromuscular scoliosis and wears a body brace for 23 hours each day.
His mum Diane Brassington – from Westbury Park, Clayton, Newcastle under Lyme – contacted leading UK children’s disability charity Newlife Foundation to help fund a new wheelchair, which costs £6,779. Now Robert’s appeal has been taken up by dedicated Newlife fundraiser Carol Edwards, from Checkley, Staffordshire, who has already raised £1,000 towards the cost of the equipment.
Diane Brassington said: “Although Robert only weighs 40 kilos (six stone, four pounds) his current manual wheelchair weighs at least the same again, which is just too heavy for myself, my 12-year-old son Jack or nine-year-old step-daughter Georgia to be able to push over any distance. And wheelchairs aren’t the easiest things to manoeuvre, either. On uneven ground it can be particularly difficult.”
Robert needs an attendant-controlled powered wheelchair which Diane, Jack and Georgia could operate without the strain of pushing.
Diane said: “A powered chair would mean Robert would be less housebound and it would be a pleasure rather than, frankly, hard work to take him out on a regular basis. For instance, I walk our dog two or three times and day and Robert would love to come out with us more often. Similarly, he could accompany me to the local shops. They’re simple pleasures but Robert would benefit enormously.” Diane added: “We have a vehicle that is wheelchair friendly and if Robert had a powered chair we could enjoy more family days out. It is just shocking that equipment which is so important is so costly.”
Soroptomist and former social worker Carol Edwards raised the first £1,000 towards the wheelchair through recent jewellery sales in the Uttoxeter and Cheadle areas. Now she is organising a larger event – selling high quality clothing, handbags and jewellery – at The Parks Country Inn and Restaurant on New Road in Uttoxeter, from 7pm to 9pm on Wednesday, August 17.
Carol said: “I am always looking for volunteers to help with events like these and prepare the jewellery – which is provided by Newlife – for sale. Anyone who has a few hours to spare or would like to find out more about the August 17 sale can contact me on 01538 723813.”
Newlife’s CEO, Sheila Brown OBE, said: “We are looking to ‘local heroes’ like Carol – who is one of Newlife’s County Volunteer Ambassadors – to help us raise money to fund equipment in Staffordshire. Newlife guarantees that 100 per cent of any gift or donation will go directly to disabled children in the county.”
Robert – who is a pupil at The Coppice Special School in Newcastle under Lyme – has been nominated in the ‘child of courage’ category of The Sentinel’s Our Heroes awards. Diane said: “I feel guilty asking for anything from a charity, but Robert needs a new wheelchair urgently. Not only will it allow Robert more freedom and open up new opportunities, it will make a big impact on the rest of the family too.”
HELP FOUR YEAR-OLD ZAYNAH TO WALK
Zaynah Fatima, aged four from Shelton, Stoke on Trent, has congenital muscular dystrophy which means she has no independent mobility and is unable to stand. It is unlikely she will ever develop any mobility skills and she relies on a powered wheelchair in school.
Newlife has underwritten the cost for a recreational walker costing £1,915 which will give her some independence and help her respiratory and digestive systems as she will be in an upright position. Dad, Younas Mohammed said: “Zaynah has tried a walker in school and was able to move around independently for the first time in her life. It will make it so much easier for her to interact with her friends too.”
ABIGAIL NEEDS A LIGHTWEIGHT BUGGY
Three year-old Abigail Evans from Hanley has Holoprosencephaly, a rare developmental disorder of the brain which means that Abigail has no independent mobility and is completely reliant on carers for all her needs. She has scoliosis, is tube-fed, has no verbal or signing communication and is partially deaf.
She requires a specialist buggy that will last her for several years as she outgrows the one provided by the NHS every six months.
Abigail’s mum, Diana Evans, said: “‘Abigail is a happy, sociable little girl who enjoys spending time with other children and openly shows her love for animals and enjoyment of the local countryside. We like to walk in the country as a family but it is difficult to do so with her at the moment. A specialist buggy would offer us all a better quality of life.”
The lightweight specialist buggy costs £3,027 and would also provide better support for Abigail. Signal One radio’s ‘Help a Signal Child’ have kindly pledged £1,000 so Newlife is appealing for help to raise the remaining £2,027.
If you would like to make a donation to help any of these children please visit https://newlifecharity.co.uk/donate Any money raised in excess of the amount needed for these children will be used to fund equipment for other children in the county.