Five-year-old Daniel Jones from Prenton on Merseyside needs a specialist communication aid so he can tell people when he is happy or sad, hungry or in pain.
Daniel has Athetoid Cerebral Palsy which means he has no functional use of his limbs and is unable to talk. He currently has to rely on facial expressions and eye pointing to make his needs known – but a specialist communication package could transform his life.
Daniel has trialled an Eye-gaze communication system, which will enhance computer accessibility, through his school – Elleray Park in Wallasey – but there is no statutory money available locally for funding. The cost of the equipment – £4,160 – prompted his family to turn to leading UK children’s disability charity Newlife Foundation for help.
Newlife has funded £206,646 of disability equipment for 160 children in the Merseyside area. But the charity is experiencing hugely increased demands on its resources; calls to the Newlife Nurse Helpline – 0800 902 0095 – have shot up and there are thousands more hits on the charity’s website https://newlifecharity.co.uk
Newlife CEO Sheila Brown, OBE, said: “Swingeing budget cuts across UK-wide statutory services mean more families than ever before are turning to Newlife for support in funding essential items of equipment like this communication aid for Daniel. So we are calling on ‘local heroes’ to help us help Daniel and his family.”
Daniel’s mum Sharon said: “He has had an opportunity to trial the equipment and his teachers were amazed at how quickly he was able to understand and use it. Daniel has recently been assessed by an educational child psychologist who has said if he can get this communication package it will bring his development on so much.”
She added: “Daniel is a bright little boy but he is trapped in his body and he can’t make his thoughts known to us. He understands everything we say to him, but he can’t reply. The Eyegaze will give him a voice and greatly increase his opportunities through his education. The availability of different software packages means it will grow with him, enabling him to learn and develop in a way which isn’t currently possible.”
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.
Newlife guarantees that 100 per cent of any gift or donation will go directly to support disabled children on Merseyside. The charity is currently working with seven families in the area, with equipment needs totalling £7,388. Any money raised in excess of Daniel’s needs will be used to help other disabled and terminally ill children on Merseyside.