When Jack Rigg was born, his parents were told he would never be able to sit, stand, walk or talk.
“We were told we had a child of very limited abilities,” says mum Carolyn.
Now, four-and-a-half years later, Jack is a lively little boy who can sign, count and is learning to operate a communication aid, as well as crawl and even take tentative steps using a specialist walker – and he is set to start mainstream school in Knaresborough this month with his twin sister Jaden.
Jack, who lives in Harrogate, has a diagnosis of Quadriplegic Cerebral Palsy and Bulbar Palsy. He urgently needs a powered wheelchair so he can fully integrate into life at St Mary’s School, but the cost of the equipment – £9,864 – has prompted his parents to approach leading UK children’s disability charity Newlife Foundation for help with funding.
Carolyn Rigg says: “While Jack is life-limited – his life expectancy is anything from 12 to 32 years old – we now have a positive outlook for his future. His potential was realised after he underwent an operation to have a jejunostomy feeding tube fitted to his stomach; he has come on in leaps and bounds since then, exceeding all our expectations.”
She adds: “We never thought he would be in a position to attend a mainstream school. If we can get the right wheelchair for Jack it can be attendant controlled initially but he can undergo training so he can manoeuvre it himself. It will give him the freedom he craves because his brain works so much faster than his body can keep up with.”
The wheelchair which best suits Jack’s needs also has a high-low capability, which means he will be able to operate at different levels. “It will allow him to join in with lots of activities with his twin sister and their friends at school,” says Carolyn.
Newlife Foundation has provided £108,769 of specialist equipment for 125 children in North Yorkshire. But the charity is experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 – have shot up by 81 per cent. This is an average of 300 calls a week, with thousands more hits on the charity’s website, www.newlifecharity.co.uk.
“Because of the huge demand,” says Newlife CEO Sheila Brown, “we are calling on ‘local heroes’ to help us raise money to fund equipment in North Yorkshire. Newlife guarantees that 100 per cent of any gift or donation will go directly to support disabled children in the county.”
If you think you can help, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Sheila adds: “Equipment ‘enables’. It can mean the difference between comfort and pain, engagement or isolation, freedom or a worsening condition. Equipment costing from hundreds to several thousands of pounds really can revolutionise a child’s life.”
Any money raised in excess of Jack’s needs will be used to help other disabled and terminally ill children in North Yorkshire.