Five-year-old Riley Smithers from Newcastle has complex needs. To ensure he is not in constant pain when he sits or eats, Riley needs a special seat that will support him properly.
Leading charity Newlife Foundation for Disabled Children is appealing to the people of Tyne and Wear for help.
Riley needs a lot of postural support and has no independent mobility. He is like a new-born baby requiring 24-hour round the clock care. He has epileptic seizures, cannot walk, talk, sit up or hold his head up and is severely deaf and blind.
Bad positioning can affect the youngster’s muscles leading to spasms which are very painful – it’s crucial that Riley has to be fed in the correct position to prevent choking.
Mum Erin was told her son needed a specialist seat known as a P-Pod and when she could not find funding turned to Newlife Foundation for Disabled Children.
“Statutory services allows him one specialised chair, which is rigid and uncomfortable for him when he is sat in it all day,” Erin explained.
“The only other places he can be placed are in his bed or wheelchair or lying him down on the sofa to get some comfort.
“Having the specialist seat will have an impact on the whole family. Riley will have comfort and so will I as I will have peace of mind knowing my son has somewhere comfortable to relax with the rest of the family. He will be the same height as the sofa and the rest of the family and in easier reach for his Brother and Sister to interact with him.
“We have tried bean bags and all sorts of other seats, but they have never supported him properly. As he would always slide down or lean to one side. I don’t know what we would have done if it wasn’t for everyone involved with Newlife and all their supporters and fundraisers.”
Newlife has helped 137 families in Tyne and Wear through equipment grants and loans totalling £170,605, so we know there is a very real county need.
That’s why Newlife – the largest charity funder of specialist equipment for children with disabilities and terminal illness in the UK – recently launched the Newlife Tyne and Wear Fund – www.newlifecharity.co.uk/tyneandwear. It is an opportunity for local people to help local disabled children and every penny donated or fundraised in Tyne and Wear is guaranteed to support families in Tyne and Wear.
In this way we aim to help more children, more quickly.
Right now Riley is one of nine children in Tyne and Wear who need your help with equipment valued at £4,553. You can help Newlife help more children like Riley.
Special disability equipment including wheelchairs, walkers, beds, seating and communication aids can help give children independence, keep them safe, relieve pain and overcome challenges. For instance, you could help a child be discharged from hospital, take their first steps or kick a football with their friends. . . .
Together we can really change the lives of children with disabilities – supporting them to experience and enjoy life and all that we take for granted.
Statutory services in Tyne and Wear often have a responsibility to make equipment provision – but when help is declined, Newlife steps in. The charity challenges many such decisions and has an impressive success rate. However, where we are unable to overturn these decisions, we provide the equipment ourselves through our range of grant and loan services. We do this with the support of front-line health professionals across Tyne and Wear who have helped Newlife help local children in real need.
The Newlife Tyne and Wear Fund will support equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Vitally, the Tyne and Wear Fund website – www.newlifecharity.co.uk/tyneandwear – will enable local people to find out who needs help in the county right now and highlight the support the charity gives vulnerable families. It includes contact details for the Newlife County Liaison Team – telephone number 01543 431 444 or email firstname.lastname@example.org – and shows specific ways people can help support children with disability and terminal illness and their families.
That might involve taking part in a local sporting challenge, give you information on how to organise a fundraising event – or even ask you to donate £5 today! Volunteers are also needed to help raise awareness of what we do and how we do it.
Newlife Foundation supports families in Tyne and Wear through a range of free services:
Emergency equipment loans
Sensory and developmental toy ‘pod’ loans.
The aim of the Newlife Tyne and Wear Fund, is to ensure children with disabilities or terminal illness in the county will not have to go without the equipment they need for everyday life.
Any monies collected surplus to requirements for Riley would be used to provide specialist equipment for another disabled or terminally ill child in Tyne and Wear.
Pictured: Riley with his dad Matthew