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‘My daughter is withering away – she’s never eaten a full meal due to rare condition’

A desperate mum is watching her ten-year-old daughter “wither away” due to a health condition – which means she has never eaten a full meal. Bethany Smith, 30, says Bella will only nibble at food at the most – and can go days without eating anything.

Bethany says doctors believe her daughter has Avoidant Restrictive Food Intake Disorder (ARFID). But she claims medical staff won’t administer any treatments and the family is now “in the lurch”.

Bethany, from Castleford, near Wakefield, West Yorkshire, said: “We are watching her wither away because the professionals are saying she isn’t poorly enough. It has been shocking, she hasn’t been well enough to go to school at all.

“She has been going in two days a week, I am self-employed so I have only been working two days a week so I can look after her. It’s had a devastating effect on the family. I am constantly worrying about money and my mental health – I don’t know what else I can do.”

Bella had a reaction to formula as a baby, resulting in rashes appearing all over her body, Bethany says. She then drank supplements from 13 months until the age of seven, which gave her nutrients and kept her at a steady weight.



Bethany Smith with daughter Bella
Bethany Smith with daughter Bella

But Bella was starting to get better in 2020 so her mum didn’t give her supplements every month to avoid stockpiling and the supplements getting out of date. Bethany said: “When she was born she wouldn’t even drink her bottles and all that. She was coming out with horrific rashes all over her body but nobody could explain what it was.

“We thought as she got older she would grow out of it and we would get an explanation but we haven’t. She tells us how she is always full. She won’t try new foods, if we are eating something we don’t like the smell of then she won’t eat it.”

Bethany wanted to take Bella for a day out to Flamingo Land in June. But she became lethargic and was taken to Pinderfields Hospital, Wakefield.

Bethany said: “The hospital took it seriously and I was finally getting somewhere. They treated her for suspected anorexia and a dietician came to see her to give her a meal plan but she wouldn’t eat that either.

“She was discharged nine days later but I didn’t agree. She hadn’t put any weight on at all and I wanted something in place that when she left the hospital she would have support.

“We were basically kicked out of the hospital and we have been left in the lurch since.” Bethany then found herself back in hospital with Bella on August 21, after she was experiencing chest pains and blurred vision.

Bethany says that doctors suspect Bella suffers from Avoidant Restrictive Food Intake Disorder (ARFID) but haven’t been able to diagnose her. The condition sees the sufferer avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both, according to eating charity Beat.

Bethany said: “We have been told she is at risk of a cardiac arrest. We are just waiting for everyone to decide between themselves, where, when and what.

“When we were in hospital on Monday we were told she wasn’t a medical emergency even though her BMI is 11.9. We’re watching her wither away because we are being told she isn’t ill enough or she isn’t a medical emergency.”

Talib Yaseen, Chief Nursing Officer at Mid Yorkshire Teaching NHS Trust, said: “We fully sympathise with Bella’s family and appreciate how distressing this experience has been for them. We have investigated the family’s complaint and are working closely with them to address their concerns and to help establish a way forward. We are aware that this is a complex case, with a number of specialist healthcare organisations involved. We are committed to supporting the family, alongside our partner organisations.

“Our team at Mid Yorkshire is monitoring Bella to best manage her symptoms whilst the relevant programme of specialist care, to which she has been referred, is established.”

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