Rhyl girl, five, who cannot sleep flat has special bed bought for her by charity

Lola Hardy-Williams, five, was born 31 weeks into mum Jodie’s pregnancy, and suffers from VACTERL, an acronym comprising seven different birth defects.

Lola has been affected by all seven of them: vertebral defects; anorectal anomalies; cardiac defects; tracheo-oesphageal fistula; renal abnormalities; and limb abnormalities.

It was also found that she had bleeding on the brain and also, due to lack of oxygen, had suffered brain damage.

Lola cannot sleep flat, otherwise she risks choking on her stomach acid, so had previously been sleeping in her parents’ bed, propped up by pillows, with one parent in the bed with her while the other slept on an air bed.

Lola with mum Jodie in her new bed. Photo: Jodie Williams

But having been made aware of her story through her Facebook page, “Lola’s Journey with VACTERL”, Rhyl organisation “Belief” paid £3,750 for a special bed for Lola.

It is the same type of bed as that which she sleeps in when staying at Claire House Children’s Hospice on the Wirral.

Yesterday (July 21) was Lola’s first night in her new bed, and Jodie described just how much of a difference it will make to her and her family.

Jodie said: “She had an operation in November which was meant to make her a food pipe, by pulling her stomach into her chest and trying to join it that way, but they couldn’t join up – it was too big a gap, and too tight.

“Since November, she’s not been able to lie flat, because she’ll choke on her own stomach acid.

“But last night, she had no choking episodes. Even though I slept next to her for the first night, we both had the best night’s sleeps we’ve had in ages.

Lola in her new bed. Photo: Jodie Williams

“The mattress can go quite high up, and you can set it to your own degree. The bed also tips up completely, as well, and because she’s got hypermobility, if she has bad days, it can elevate her legs.

“The panels are a lot longer, so when she’s sat or stood up, she can’t climb out, either, but she can still see out of the bed.

“She wanted to get into it straight away. She recognised that it’s a bed she’ll feel safe in.

“She woke up really happy, saying: ‘I love my bed’. When she first saw it, the first thing she said was: ‘It’s my bed in Claire House’.”

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Steve Evans, founding member of Belief, said the charity was only too happy to help Lola, having been moved by her story after discovering it through her Facebook page.

Steve said: “We came across Lola’s story, got in touch and asked if there was anything we could do, and Jodie said about how her bed just wasn’t suitable.

“The bed we’ve got her has got the feeding tube that she needs… they don’t come cheap, but we unanimously agreed that we don’t want to see people suffer like that; it’s awful.

“(It’s worth it) for a couple of thousand pounds… it brought a tear to my eye hearing from Lola’s mum how she slept last night, knowing that she had a good night’s sleep.

“We had the money in the pot to go and do it, and didn’t want to have that little girl sleeping how she was, with her parents having sleepless nights worrying about her, so we had no hesitation in ordering it straight away for her.

“To see that smile on her face makes everything we do worthwhile. She’s a lovely, lovely little girl.”

You can follow Lola’s story yourself by visiting: www.facebook.com/lolajourney16.

For more on Belief, go to: www.facebook.com/Belief-872444362787322.