Little Curtis Tuffy will be spending his first Christmas at home with his family, thanks to emergency provision of a specialist bed by a national children’s disability charity.
Curtis, from St Helens, has a complex developmental disorder of the brainstem and congenital facial conditions (Meobius Syndrome and Pierre Robin Sequence) which mean he is ventilator dependent 24 hours a day. He relies on his family and carers for all aspects of daily life.
Recently, hospital staff told his parents Curtis was well enough to finally go home – but only if they could get a specialist cot bed to care for him. Mum Kayleigh Howard said: “We had been waiting for so long for a bed that we decided to apply to Newlife Foundation for Disabled Children for help. Once we had completed the application the bed was delivered within two days – and Curtis came home from hospital the day after.”
She added: “It’s brilliant. It has helped having the baby home and he is making good progress.”
The child-specific profiling bed has a high-low facility to help Curtis’s parents when they are handling him and a tilt facility that enables him to be appropriately positioned to help with his breathing.
The specialist equipment has been provided by leading UK children’s disability charity Newlife Foundation through its Emergency Bed Loan Service which is about to be rolled out across the UK.
Newlife Foundation – which recently announced it had hit the £10million landmark for provision of specialist disability equipment for children in the UK (£228,121 of this for 182 children in Merseyside) – will be launching the Emergency Bed Loan Service in response to a recent surge in demand.
Newlife Lead Nurse Karen Dobson said: “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.
“Among those calls we regularly hear of are children who are not able to leave hospital or 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 support and respite for their carers.”
The Newlife Emergency Bed Loan Service will offer loans of high sided, height adjustable profiling beds to support children’s medical and safety needs. Any queries regarding this new service can be directed to Newlife Equipment Loan Services Manager Carrick Brown on 0800 902 0095.
All Newlife services can be accessed through this number, which goes direct to the national Newlife Nurse Helpline offering information and guidance on a range of disability issues.
The charity is currently working with the families of a further nine disabled and terminally ill children in Merseyside with equipment needs totalling £36,692. This surge in demand for services has prompted the charity to call for ‘local heroes’ to come forward to fundraise or donate towards the cost of specialist equipment for children in the county.
For instance, Newlife supporters can choose to take on a sponsored sporting challenge, host a coffee morning or cake sale, make and sell handcrafted goods, organise a pub quiz or community car wash, hold a sponsored silence or stage an evening of entertainment.
Newlife CEO Sheila Brown, OBE, said: “Newlife guarantees that 100 per cent of any gift or donation will go directly to provide equipment for disabled and terminally ill children – and donors can ring-fence their money to a specific 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.
Pictured: Curtis Tuffy