Provision of a specialist bed means three-year-old Ellie Goodwin doesn’t have to sleep in a car seat for her own safety.
Ellie, from Linthouse in Glasgow, has a rare condition – Smith-Magenis Syndrome – which means she has developmental delay and learning and behavioural difficulties. Once her five-year-old brother had taught her how to climb out of her cot, night-time safety became an issue.
Mum Isabella Murray said: “Ellie has no awareness of danger and decreased sensitivity to pain. Once she could climb out of the cot she would do some really dangerous things, like wrap wires round her neck. The only way we could keep her safe at night was to put her in her car seat and then put that inside her cot; it was the only way we could monitor her.”
With no alternative sleeping arrangement being offered by their local statutory services, Isabella made it her ‘mission for 2014’ to find a suitable solution. “It just wasn’t acceptable for her to continue to sleep in a car seat,” she said.
A support worker told her about Newlife Foundation for Disabled Children, a national charity which offers a range of practical services to families around the UK. Isabella said: “We contacted the Newlife Nurse Helpline – and nine* days later Ellie had the bed she needed. It has made a big difference.
“Ellie’s condition means she doesn’t like change, so for the first few days she was a bit ‘hectic’. But then she settled down. She used to be up six or seven times a night and now it is only usually once. She gets up around 7am and now and, for the first time, she is trying to communicate with us. Sometimes, when Ellie comes home from nursery, she actually asks to go to bed, using the Makaton communication system. Even her nursery school in Govan has noticed the difference in Ellie.”
Newlife Foundation provided the equipment for Ellie through its Emergency Bed Loan service. The charity’s Equipment Loan Service Manager Carrick Brown said: “This quick-response service is designed to help children with life-threatening conditions – for instance those who may experience multiple seizures or who need resuscitation – or are sleeping in unsafe environments. The six month loan period will give us time to work with local statutory services to explore avenues of public funding for long-term equipment or – if this is not successful – provide it ourselves through the Newlife Equipment Grant service.”
To find out more about the range of practical support services offered – free of charge – call the Newlife Nurse Helpline on freephone 0800 902 0095 or email [email protected].
Lead Nurse Karen Dobson added: “An increasing number of families are contacting us for help in assisting their disabled and terminally ill children’s often complex conditions through specialist equipment provision. We regularly hear of children who are not able to leave hospital or who are sleeping on mattresses on the floor because a standard bed cannot keep them safe at night. Specialist beds are costly pieces of equipment but they can transform the lives not only of the children concerned, but offer much needed respite for their carers.”
If would like to help other children in the Glasgow area like Ellie, call the Newlife Community Fundraising Team on freephone 0800 988 4640 or email [email protected]. Newlife guarantees that 100 per cent of all monies donated or fundraised in Glasgow can be ring-fenced to specifically provide equipment for disabled and terminally ill children in the area.”
The charity’s CEO Sheila Brown, OBE, said: “As cutbacks continue to bite into local authority budgets we can expect to see applications for Newlife equipment services continue to rise. As a charity we are looking increasingly to ‘local heroes’ to help us help children in individual areas.”
* The bed was delivered just nine days after the initial contact, once Newlife had liaised with Ellie’s occupational therapist to confirm which type of specialist bed would be most suitable. The service aims to deliver equipment within 72 hours of applications being supported by the family’s health professional.
Pictured: Ellie Goodwin with her new bed.