Halifax mum's plea for help to treat son - who hasn't eaten for 50+ days

A mum from Halifax whose child has now gone more than 50 days without eating food is telling us about her desperate search for a service that will help.

Samantha Loughry got in touch with us after hearing our story earlier in the week about the eating disorder ARFID (Avoidant Restrictive Food Intake Disorder).

It’s a condition where people avoid certain foods, leaving them with an extremely limited list of items that they can eat. Often they have to be a specific brand or presented in a certain way.

For Samantha’s 11-year-old son, it was McDonald’s chicken nuggets. They're the only food he's eaten for years – but now he’s even stopped eating those.

He was diagnosed with ARFID at Sheffield Children’s Hospital in 2021, where he was fitted with a nasogastric feeding tube to keep him alive.

But he was then discharged back into the care of his local NHS team in Calderdale, which doesn’t have a service to treat ARFID - leaving Samantha continuing to feed him via a tube while she searches for somebody who can treat him.

She says she feels like he’s been ‘abandoned’ – adding that he’s still got the original feeding tube he was fitted with, despite the fact it should’ve been changed every six months.

"He keeps asking me, 'am I ever going to get better?'"

“The only way I can describe it is that it’s a sensory fear of food,” says Samantha.

“This is his fear. He is anxious from the minute he gets up in the morning because he can smell breakfast cooking.

“Me and my husband have tried everything. And now we just give him his tube like it’s just normal. But it’s not normal, and I know it’s not normal.”

Her son, who also has autism, comes home from school around lunchtime each day to have one of his tube feeds. He has four a day, with each one taking two hours to administer.

Samantha had to quit her job as a carer in order to care for her son, who also gets sent home from school any time there’s an activity or event involving food.

“He keeps asking me, ‘am I ever going to get better?’ And it kills me as a mum that I can’t help him.

“It’s horrific. It’s taken over my life, and I’m constantly trying to find somebody to help.

“I feel like I’m losing my child, and I think I’m losing myself to be honest. It’s just horrific.”

Samantha says she wants to help raise awareness of the condition and let other families who are struggling with it know they’re not alone.

She also spoke about the cost issue when it comes to feeding a child with ARFID – who will know and refuse it if you try to give them a cheaper version or brand.

“Because it’s so hard to understand and it’s not known, people don’t WANT to know about it,” she says.

“Me and my husband have gone days without eating because we needed to feed our child.

“It’s so expensive to feed an ARFID child. If they don’t have that food, they will genuinely not eat anything else. They will starve.

"If my son didn’t have his feeding tube, he would be dead.”

A spokesperson for the NHS West Yorkshire Integrated Care Board said:

“There is currently no commissioned service for Avoidant Restrictive Food Intake Disorder (ARFID) in Calderdale. This is being considered.

“Children and young people who are demonstrating restrictive eating patterns can be referred for an ARFID assessment to an approved NHS provider. This is usually through a patient’s GP. Calderdale Open Minds (CAMHS) service, a partnership of local organisations, can provide further advice and support.

“Whilst we cannot comment on individual cases, we would encourage anyone who has concerns about their follow up care to contact their health care provider.”

An NHS England spokesperson said: “The NHS has worked tirelessly to be able to treat almost three-quarters more children and young people for eating disorders than two years ago. We acknowledge that more is still needed which is why we are also rolling out mental health support teams, and have doubled the number of children and young people we have seen, as well as establishing 24/7 crisis lines.”