A Llanbradach eight-year-old who has Cerebral Palsy affecting both his arms and legs was able to come home from hospital after recent surgery, thanks to the loan of a specialist bed from Newlife the Charity for Disabled Children. He can now sleep safely through the night – but he desperately needs a permanent bed of his own.
Mason Woods has a form of Cerebral Palsy which means his arms and legs are stiff and rigid and he experiences painful spasms. As well as being unable to sit, walk or talk, Mason has chronic lung disease and will breathe food into his lungs, so he needs to be tube fed. He has undergone five surgeries, the most serious one because his intestines hadn’t formed properly.
After his latest stay in hospital doctors told his parents, Rachel Carter and Darren Woods, that Mason couldn’t be discharged unless there was a suitable bed at home to keep him safe, so they turned to Newlife – the UK’s largest charity provider of specialist equipment for children with disabilities and terminal illness – which promptly delivered the specialist bed they needed through an Emergency Equipment Loan.
Now Mason is home and sleeping in the correct postural position, with his head raised to prevent him from choking and padding to stop him hurting himself as his arms and legs spasm. Mason will need this support long-term – and bed is on temporary loan. So Newlife is now trying to raise the funds needed – £3,011 – to secure permanent provision. If you would like to support Mason, go to www.newlifecharity.co.uk/caerphilly and click on the Donate button next to his story. Any funds raised above what is needed for Mason will help pay for equipment for another child in Caerphilly.
Mason was born prematurely at just 25 weeks and four days of pregnancy – four days before his twin brother Morgan was delivered, joining siblings Sam, 17, Abbie, 21, Adam 22, Ieuan 24, Karl, 28, and Kayleigh, 29. Mason and Morgan were both diagnosed with Cerebral Palsy, but Mason weighed just 1lb 7oz at birth and suffered a bleed on the brain which resulted in him being kept in hospital for the first seven months of his life.
Mum Rachel said: “Mason is my miracle baby. He has a shortened life expectancy and there have been numerous times we have been told he is just about surviving. It’s a rollercoaster. But anyone who meets Mason wouldn’t forget him – he’s always smiling and making noises. He’s aware and very nosy, he’s always looking around and he loves people and being around others, but we have to watch him constantly.
“If he moves he can’t always get himself back again, he can’t turn himself and we always need to make sure he is comfortable as he can’t put his head or his legs down. A standard bed wouldn’t be comfortable for him at all, but in the loan bed he is safe, comfortable and sleeps better in general.
“If we have a permanent specialist bed Mason will be safe – and we have been told the NHS will supply a sleep system which will also help to keep him in position and give him the extra support he needs. Having a permanent bed for Mason would be a weight off my mind.”
Newlife’s is the only nationwide emergency equipment loan service in the UK, offering a rapid response – often within 72 hours – for families of life limited and terminally ill children and those sleeping in unsafe environments, like Mason. Loans of equipment are for around six months, while Newlife works with local statutory services to secure provision. If this isn’t possible, Newlife can look to provide permanent provision through its Equipment Grant service.
Newlife is currently receiving more Equipment Grant applications than at any time in its 25-year history, which is why public support is needed to help families caring for disabled and terminally ill children in Caerphilly. Newlife guarantees that 100 per cent of monies donated or fundraised in Caerphilly will be used to specifically help children with disabilities and terminal illness in the area The website www.newlifecharity.co.uk/caerphilly includes contact details for the Newlife County Liaison Team – tel no 01543 431 444 or email [email protected] – and shows specific ways people can help support children with disability and terminal illness and their families in the Caerphilly area.
Pictured: Mason Woods