Aberdare family's bid to get boy a bed 'to keep him safe'
- Published
"It's just not fair on him"
Family of a disabled four-year-old are trying to get a specialist bed which they say prevents him from choking.
Ashley Odugbesan has fragile bones, chronic lung disease, a heart condition and is registered blind.
He vomits several times a day, so needs to be propped up while in bed, his mother Charlette said.
She said the bed was provided when they lived in Cardiff, but after moving to Aberdare, Rhondda Cynon Taff, to be near family, Ashley does not qualify.
Rhondda Cynon Taf council said it was the health board's responsibility to provide the bed and was "supporting the family in their need for a specialist bed and have approached and challenged the health board".
The adjustable bed has high padded sides, preventing Ashley from getting up unattended in the night.
"What I've been told is that Ashley doesn't meet criteria," Ms Odugbesan said.
Cwm Taf Morgannwg University Health Board said it could not comment on individual cases.
A spokeswoman said: "If and when any concerns are raised we will look carefully at the process and review where appropriate."
Requests for specialist beds go to the community children's nursing team when there is a primary nursing need and considered against the protocol for provision of children's beds in the community, she added.
Ashley was born premature and has several health conditions
Newlife, the charity for disabled children, provided an emergency loan of a specialist bed but said a permanent bed was still urgently needed and would cost £5,830.
It is appealing for help to get Ashley a bed and an anonymous donor has pledged to match all donations.
Ms Odugbesan said "lovely" Ashley liked people singing to him, soft play and specialist lights.
She said she "can't even imagine" what life without the bed would be like.
"We wouldn't be able to sleep… it's such a worry.
"He wouldn't be kept safe in the night, there's a risk that he could fall down the stairs, the risk he could get into one of his brothers' bedrooms, he wouldn't sleep either, he could hurt himself, he could be sick he could choke - we wouldn't manage without the bed."
Ashley's mother Charlette said she has been "really worried" about the situation
The four-year-old cannot walk far and has fragile bones which fracture easily
Ms Obugbesdan added: "I wish we hadn't moved up here, it's been terrible. I feel as if I'm like a second class citizen - sometimes I feel really discriminated against.
"It's just not fair on him because I can't look after him properly, he should be getting the services we shouldn't have to have to fight - because life is hard enough.
"I think whoever makes the decisions should come out and spend a day with him, because they'll be giving him everything."
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