The family of local East Sussex boy Rhys Sullivan are backing the launch of an appeal to provide specialist equipment for children with disabilities in the county.
Rhys’s parents are so pleased with the specialist buggy they now have to carry his emergency equipment when they leave the house that they are urging local people to help change the lives of other local children.
Right now, there are three children with disabilities or a terminal illness in East Sussex who need your help to get the specialist equipment that will really change their lives. That’s why leading UK children’s disability charity Newlife Foundation is launching the Newlife East Sussex Fund – www.newlifecharity.co.uk/eastsussex. It is an opportunity for local people to help local disabled children and every penny donated or fundraised in East Sussex is guaranteed to support vulnerable families in the county.
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. . . .
You can help Newlife help more children like Rhys (full story below).
Together we can really change the lives of children with disability and terminal illness – supporting them to experience and enjoy life and all that we take for granted.
Newlife has already helped 71 children in East Sussex through equipment grants and loans totalling more than £125,000, 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 East Sussex 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 East Sussex who have helped Newlife help local children in real need.
The Newlife East Sussex Fund will support equipment provision for under-19s facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
Vitally, the Newlife East Sussex Fund website – www.newlifecharity.co.uk/eastsussex – will enable local people to find out who needs help in their county right now and highlight the support the charity gives vulnerable families. 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 East Sussex 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 East Sussex through a range of free services: Nurse-staffed helpline Equipment grants Emergency equipment loans Sensory and developmental toy ‘pod’ loans.
BUGGY BOOST GETS FAMILY OUT AND ABOUT
Provision of a specialist buggy to hold all his emergency equipment meant little Rhys Sullivan could be discharged from hospital to his home in Marle Green near Heathfield.
Mum Naomi Sullivan said: “Rhys has a tracheostomy and is ventilated 24 hours a day. Part of our training for his care was to demonstrate we could cope with day trips out from hospital. For this we had to have a specialist pushchair – which is where Newlife came in.”
There was no local statutory funding available for this vital equipment for Rhys so – due to its cost of £909 – the family turned to Newlife.
The seat on the buggy can be either outward or parent facing – so Naomi and her husband Duncan can monitor Rhys’s condition. It also accommodates his tracheostomy box, ventilator, suction machine and manual resuscitator, all properly balanced so the buggy won’t tip over.
Rhys – who is 11 months old – was discharged from hospital at the beginning of February and has since progressed “in leaps and bounds” said Naomi, who added: “I would be housebound without the buggy.”
“I walk the three-quarters of a mile into the village every day, the dog is walked once a day and Rhys’s two-year-old sister Immi attends a local pre-school nursery one day a week so the buggy is essential. Apart from his professional carers, I am the only person fully trained to look after him so Rhys has to be with me just about all the time. I even need to use Rhys’s buggy to transport him and all his equipment from the house to the car because I can’t carry everything at once and I can’t leave him alone, even for a minute.”
She added: “Newlife’s nurses, who staff the charity helpline, have been so supportive and helpful – and the equipment itself is absolutely perfect for Rhys’s complex needs.”
Pictured: Rhys Sullivan