Mum Rachel Martin has just one New Year’s wish – to get a specialist bed for her disabled 11-year-old son James.
Rachel, from Rhostryfan near Caernarfon in North Wales, said: “James has a rare condition called Angelman Syndrome which means he has epilepsy, learning difficulties and limited mobility. In addition to this he has no awareness of danger so needs constant supervision, is unable to communicate and has a hearing impairment.”
She added: “James is one of only two or three children with Angelman Syndrome in North Wales; certainly he is the only registered child. As rare as it is, Angelman Syndrome has received press attention recently following news that Hollywood actor Colin Farrell’s son also has the condition.”
James, who is a pupil at Ysgol Pendalar in Caernarfon, needs a specialist bed which is strong enough to withstand his complex behaviours, have a high-low setting to assist with changing and dressing and padded high sides to ensure his safety at night.
There is no statutory provision for this sort of bed in North Wales and the cost of the equipment – £7,076 – prompted Rachel to turn to Newlife Foundation for Disabled Children for help.
Newlife has provided £27,384 of equipment for ten children in Gwynedd but is currently experiencing hugely increased demands on its resources; for instance, applications for Equipment Grants to the Newlife Nurse Helpline – 0800 902 0095 – were up by 95 per cent, year on year, in October 2012. The charity has received thousands more hits on its website https://newlifecharity.co.uk
Newlife CEO Sheila Brown, OBE, said: “Because of the huge demand we are calling on ‘local heroes’ to help us raise money to fund equipment in Gwynedd. Newlife guarantees that 100 per cent of any gift or donation will go directly to support disabled children in the county.”
Rachel Martin told Newlife: “James had been using a smaller specialist cotbed which we were given a few years ago. However, in addition to outgrowing the cotbed he had broken the sides through constant kicking and the high-low function no longer works; it got stuck in the high position so he was able to climb over the top of the bed. We have had to resort to him sleeping on a mattress on the floor, for safety.
“But James, like all Angelman children, has a sleep disorder which means he sometimes only sleeps for two or three hours a night. If James is able to get out of bed he will – and roam the house. He has turned on taps and even got outside. So I sleep with one eye open. And parents who don’t get enough sleep don’t have the ability to properly cope with their disabled children.
Rachel – who is also mum to Alexandra, 15, Isaac, six, and Elizabeth, five – said: “If we could get a replacement, larger specialist bed then I would know that even if he wasn’t asleep he would be safe – and so would the rest of the family.”
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. Any money raised in excess of James’s needs will be used to help other disabled and terminally ill children in Gwynedd.
Sheila Brown added: “Equipment ‘enables’. It can mean the difference between comfort and pain, engagement or isolation, freedom or a worsening condition. Therefore, our equipment grants are vital to so many children, offering practical support to families. Items can range from buggies and beds – like this one for James – to specialist seating and communication aids. Equipment costing from hundreds to several thousands of pounds really can revolutionise a child’s life.”