"It's been so hard for us all" - Mum-of-three from Halifax on impact of her son's rare eating condition
Samantha Loughrey's son is Evan, 11, has ARFID - avoidant restrictive food intake disorder - and dyspraxia.
The condition is characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.
Estimates suggest around five per cent of children are affected by the condition, but Samantha says getting a diagnosis is very difficult as many medical practitioners aren't aware of it.
"My son has been diagnosed since 2021 when he completely stopped eating," said Samantha, 44, from Ovenden, who also has a daughter, Mara-Jade Loughrey, 18, and daughter Jaina Loughrey, five, with her husband Lyndon, 47..
"He was admitted to hospital after being turned away twice after 10 days without eating or drinking.
"Only then did they finally started listening.
"He was diagnosed with ARFID at Sheffield Children's Hospital and got diagnosed with autism and sensory processing disorder the same year.
"I had to give my job up to find someone to diagnose him and help at the time.
"I found two hospitals that could diagnose ARFID - Sheffield Children's Hospital or Great Ormond Street in London.
"I had to ask my doctor, who knew nothing about ARFID. Only when I gave him information on it did he put a referral in to the doctor in Sheffield."
A few months later, Evan was diagnosed within 10 minutes of being there, with the doctor telling Samantha it was one of the most severe cases they had seen.
"Evan was living off McDonald's chicken nuggets," Samantha said.
"It had to be 20, in the same box, same YouTube channel, same spot in the living room with nobody there, everyday, twice a day for five years.
"It cost £150 to £170 pounds a week.
"That's not mentioned much but an ARFID child can be very expensive.
"Even though it is a diagnosed eating disorder, ARFID is not a choice, they don't choose to live on certain foods.
"It's a life-limited condition. My son gets really distressed when food is about.
"He says it's like your fear everywhere, all the time, as food is everywhere.
"He doesn't like people knowing about his illness as he thinks people will think he's a freak."
Samantha wants to raise awareness of the condition to help other families who may be experience similar issues.
"I've been fighting for awareness for ARFID for a long time," she said.
"This has had a major impact on firstly my son, who makes me proud everyday, and our children, and me and my husband.
"It's been so hard for us all.
"I really hope doing this has helped someone.
"My son is now fully relying on a feeding tube as he gave up eating over 60 days ago.
"He has had nothing, with no support.
"We've also had the stress of not knowing what secondary school he's going to because he has not yet got an education, health and care plan in place.
"We have appealed and have not been accepted and have no idea where he is going to school.
"Everything is a let down for him, missing out on school trips, parties and social events.
"If there is anyone that can help, please get in contact on 07340 209552."
Halifax MP Holly Lynch said: "I have supported Samantha over a number of years in seeking to get the help and support she needs for her son Evan, including raising the challenges she has experienced with Government ministers.
"The Government has said that it has invested in pilot schemes and training for staff working with children who have Avoidant Restrictive Food Intake Disorder, however from the correspondence I have seen from local services, it’s clear that there isn’t a great deal of understanding and specialist care for children with this type of disorder.”