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National
Katie Collings

Girl, 4, with rare condition desperately needs a specialist bed to keep her safe at night

A safe place to sleep at night is something every child should have.

But when that child has complex needs, it's unfortunately not that simple.

Erin Reed was born premature and diagnosed with the rare CHARGE syndrome and subsequently has a number of difficulties.

She has a hearing impairment, delayed development, a tracheostomy, is tube fed, and is dependant on oxygen at night.

The four-year-old was, until recently, unable to sit up by herself so is often confined to a buggy.

But now that she has gained some independence and is able to pull herself up, her bed is no longer safe for her.

A specialist bed fit for Erin's needs would cost over £7,000.

"It's nothing we could ever afford," mum Emma, 38, said.

"It's not a luxury, it's something to keep her safe."

This is where the Sunshine Fund comes in.

Erin Reed with sister Scarlett and dad Steve during the 2018 Go Bananas campaign (Newcastle Chronicle)

The charity, which purchases specialist equipment for local children with disabilities, is in the middle of their annual Go Bananas campaign and has chosen Erin to be one of the children to benefit.

They hope to raise a huge £40,000 this June to help change the lives of these North East children.

Last year, they provided Erin, from Whitley Bay, with a specialist seat that would help her to feel included when out with her family instead of having to stay in her buggy.

Emma, Erin's full-time carer, said: "It's just been marvellous and wonderful. It's really helped Erin to feel included.

"We take it all over with us, she's coming along great. She can now sit up so it helps give her some extra support.

"She still doesn't like siting in her wheelchair and it's not nice for her to be sat alone. She's really sociable."

The specialist bed Erin needs will help the family with a number of things as her needs have changed.

"She has no sense of danger and she doesn't have any balance so we need a bed with high sides, her old bed is no longer safe for her now she can pull herself up.

"We also need a bed that can raise up so we can change her tracheostomy and not damage our backs."

The sides of the bed are also transparent so Emma and husband Steve, 46, can monitor Erin and her oxygen when they need to.

"Then we realised how much it was going to cost," Emma, who also has two-year-old Scarlett.

"It's shocking. I know they don't just come off a shelf, they have to be specially made but it's an awful lot of money.

"We're so grateful to the Sunshine Fund because she needs this.

"We're currently changing her tracheostomy on the floor which isn't hygienic, isn't good for her and it's not good for our backs so we're really looking forward to getting the bed."

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