When Preston mum Stephanie Lowe needed a new specialist car seat so her two-year-old could continue getting to her many medical appointments in safety, she knew exactly what to do. She called Newlife Foundation for Disabled Children’s Nurse Helpline.
Stephanie’s daughter Keira has Cerebral Palsy and Epilepsy. She has no head control, is unable to sit unaided and needs full postural support. When she outgrew her old specialist car seat – also provided by Newlife –
Stephanie knew getting a replacement could be both difficult and costly.
Newlife is the largest charity funder of specialist equipment for children with disabilities and terminal illness in the UK, where it is also the biggest single provider of specialist car seats. Newlife has invested more than £1.6million in the in-car safety of children with disabilities and terminal illness. This is because local authorities do not have a statutory obligation to supply this equipment; instead, families can apply for a medical exemption certificate which allows their children to be transported unsecured.
However, Newlife believes that the safety of disabled children is as important as the in-vehicle security of able-bodied children and is currently campaigning for a change in the law. In the meantime, the charity continues to support families through provision.
Stephanie said: “Keira has regular hospital appointments at Alder Hey and Preston hospitals and goes for respite care in Liverpool, so travelling by car is essential.”
A regular car seat would not adequately support her head and body – and posture is important as Keira is fed through a tube in her stomach and a feeding pump accompanies her on many of the journeys. In addition, a specialist seat with a swivel base will help her parents transfer Keira and her equipment in and out of the vehicle more easily.
Recognising the urgency of the situation, Newlife has fast-tracked the application and the family will soon be taking delivery of the new £904 car seat.
Right now, there are another 30 children with disabilities or a terminal illness in Lancashire who need your help to get the specialist equipment that will really change their lives. That’s why Newlife Foundation is launching the Newlife Lancashire Fund – www.newlifecharity.co.uk/lancashire. It is an opportunity for local people to help local disabled children and every penny donated or fundraised in Lancashire is guaranteed to support vulnerable families in the area.
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 and terminal illness – supporting them to experience and enjoy life and all that we take for granted.
Newlife has already helped 334 children in Lancashire through equipment grants and loans totalling more than £445,000, so we know there is a very real need for a specific county fund. In this way we aim to help more children, more quickly.
Statutory services in Lancashire 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 Lancashire who have helped Newlife help local children in real need.
The Newlife Lancashire Fund will support equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Vitally, the Newlife Lancashire Fund website – www.newlifecharity.co.uk/lancashire – will enable local people to find out who needs help in their county right now and highlight our support. It includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – 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.
We hope that by launching the Newlife Lancashire Fund, children with disabilities or terminal illness in the county won’t have to go without the equipment they need for everyday life.
Newlife Foundation supports families in Lancashire through a range of free services:
Emergency equipment loans
Sensory and developmental toy ‘pod’ loans.
Pictured: Kiera Lowe-Melling