The local community is being asked to make an Aberdale couple’s Christmas by helping to fund a specialist bed to keep their four-year-old disabled son safe – after moving house meant he was no longer entitled to one funded by the NHS and council.
An adjustable bed with high padded sides kept Ashley Odugbesan safe when he lived in Cardiff, thanks to local health and social care services. Yet when the family moved just 20 miles back to Aberdare for more family support they found his multiple health issues didn’t meet the criteria set in Rhondda Cynon Taff.
Ashley has a genetic condition so rare doctors can’t yet identify it. He has thin, fragile bones which fracture frighteningly easily and he can only walk a few steps before dropping to the floor.
He’s registered blind, doesn’t speak, and has chronic lung disease and a heart condition. As if that wasn’t enough, he vomits multiple times a day and chokes on this as well as his own saliva unless he’s propped at just the right angle. He has the understanding and awareness of a six-month-old.
Newlife the Charity for Disabled Children provided the emergency loan of a specialist bed to stop the immediate risk to Ashley – but a permanent bed is still urgently needed which costs £5,830. Newlife is appealing to the local community for help and an anonymous donor has already pledged to match all donations the charity receives for this pound for pound.
Mum Charlette said: “A specialist bed is literally a life-saver for Ashley. I don’t know how we will cope in the long-term without one. The thought terrifies me.
“The adjustable specialist bed raises Ashley’s head and chest to prevent him choking, high sides stop him climbing out and the padding is a vital to preventing more fractures.
“We moved to Cardiff because Ashley was in intensive care there for nearly a year after he was born. After we had our now ten month old, Zachary, we decided to move closer to family for more help, but it turned out to be the worst decision. I can’t believe there’s such a difference in criteria for equipment between areas, it’s ridiculous.
“Ashley urgently needs a bed of his own to keep him safe long-term. It would mean that we don’t have the constant worry of this on top of everything else we have to cope with.
“Before Ashley I never dreamt a bed could make so much difference – but it really would be life-changing for us. It would be the best Christmas present we could ask for.”
Newlife’s Senior Manager for Care Services, Carrick Brown, said: “Local health and social care authorities set their own criteria for funding – but growing budget constraints mean families are often left with no alternative but to turn to charities like Newlife.
“Unfortunately, as much as we want to help Ashley and his family, we simply don’t have the funds to buy the equipment right now. We are appealing to the local community for help to raise the money so Ashley can receive a specialist bed of his own to keep him safe in the long term.”
Anyone able to help Ashley should urgently contact Newlife on 01543 431 444, visit the website at www.newlife.support/HelpAshley or email firstname.lastname@example.org. You can also text NEWLIFE ASHLEY to 70500 to give £10 to ASHLEY’s appeal. Newlife will receive 100% of your donation. Texts cost £10 plus 1 message at your standard network rate. Always get the bill payers permission.
Ashley is just one of 14 children in Wales on our waiting list and in desperate need of specialist disability equipment costing a total of £26,708 so every penny we raise is so vital. Money raised above the amount needed for Ashley’s specialist bed will be used to help other disabled and terminally ill children in need.