A five-year-old girl risks excruciating third degree burns from her own stomach acid every time she falls asleep. Lola Hardy-Williams from Rhyl was born prematurely with a birth defect that affects her whole body including her eyes, spine, and digestive system.
The condition, known as VACTERL, means little Lola was born without a food pipe and underwent life-saving surgery soon after she was born. As a newborn, she was at risk of drowning in her own stomach acid so surgeons were forced to create a hole in the side of her neck to drain the fluid, reports North Wales Live.
Whilst the operation saved Lola's life, it means she faces excruciating burns from her own stomach acid every time she lies flat. To avoid being burnt, Lola needed to sleep in a specialist hospital bed which costs £3,750. But with the rising cost of living and no funding available from their local authority, her devoted parents had no way to afford it.
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Jodie Williams is a full-time carer for her daughter but without the proper equipment, she was forced to improvise at home. It meant Lola's mum and dad propped her up with pillows and took it in turns to wake throughout the night to care for their daughter, each time worried that she would have suffered fresh burns.
Despite battling complex health needs, Jodie said Lola is "the happiest girl in the world," but relentless burns and sleepless nights had begun to take their toll. She told North Wales Live: "The safest option was having her in bed with us, but even then she was choking on the stomach acid and getting burnt in the night.
"We had to change her during the night because her clothes were covered in the stomach acid, and then it would disturb her feeding tubes and all the other equipment. I was always on edge watching her and listening to her breathing."
Jodie shares updates on Lola's condition on a Facebook page, with the aim of giving people an insight into caring for children with VACTERL and other disabilities. It was here that Steve Evans, founder of local charity, Belief, spotted Lola's story and offered the family a lifeline.
Jodie said: "The people from Belief got in touch with me on Facebook asking if there was anything they could do to help. I mentioned the bed but because it was so expensive, I told them it was fine if they couldn't help.
"But then they said they could, and said they were going to help us. As parents of a child like Lola, we have to fight for every piece of medical equipment so to have a charity help us and get it within a couple of months made a huge difference.
"Everyone deserves to have a bed where they can be comfortable and safe. The first night she slept in it she woke up so happy, and it's the first time in months she hasn't choked in the night and the first time I've had a proper undisturbed sleep because I knew she was safe."
Steve said he was determined to help the family after seeing Lola's story on social media. Speaking to North Wales Live, he said: "When Lola's mum told us about their sleeping arrangements, it was really heartbreaking.
"It was horrible to hear what they were going through and we knew we couldn't let that happen. We had a meeting at Belief and it was unanimous that we wanted to help them.
"We ordered the bed for them straight away and Lola got to pick out the colours she wanted. When I saw the pictures with her new bed it brought a tear to my eye because that's what we're all about.
"All we want to do is try and help make a difference and hopefully this will help her parents as well. Seeing that little girl's smile means we've succeeded in what we wanted to do."
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