Mum Emma’s hope in raising mass awareness of ARFID diagnosis in Eating Disorders Week
Oliver was just 2 years old and losing weight. He spent Christmas Day to New Year’s Day of 2022 in hospital. He was clinically malnourished and dehydrated.
Throughout 2023, he spent the night being fed for ten hours hooked up to machines, along with 4 hours during the day. He is still entirely reliant on his gastrostomy tube for all his nutrition and fluids.
It’s now 17 months since he’s eaten anything orally..
A heartbreaking story “but one that needs to be told far and wide” says mum Emma Taylor who along with husband Matty have hope that with a huge increase in awareness around Oliver’s condition, more resources can be devoted to treating children like Oliver.
“Oliver is diagnosed with a condition known as Avoidant Restrictive Food Intake Disorder (ARFID),” explained Emma.
“We want to urgently raise mass awareness of ARFID so that it can be better understood.”
It’s an especially good time to speak out because the final week of February is designated Eating Disorders Awareness Week.
ARFID is an eating disorder that involves intense avoidance or restriction on the amounts of food or types of food a person eats. It is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or is restricted in quantity (eating small amounts).
“Contrary to some misconceptions, ARFID isn’t affected by a person’s beliefs about the size and shape of their body and someone with the condition doesn’t restrict their food intake for the specific purpose of losing weight.
“Yes it’s an eating disorder but children as young as two can be diagnosed.
“For Oliver, who is also autistic, it’s very much about sensory issues and fear. He is absolutely terrified of food.”
After 4 months with a NG Tube, Oliver underwent surgery in April last year when a more permanent tube was fitted into his stomach. “Yes he’s gained a third of his body weight in almost 12 months thanks to tube feeding but you can imagine the impact on him and our family.”
“He still gets very distressed around food and we miss out on a lot of things like family meals and birthday parties.”
Oliver sees a specialist dietician every month who helps the family try to tackle Oliver’s fear around food but to him, it’s the scariest thing in the world.
“Too many people have said that he’ll eat when he is hungry but Oliver won’t, he will literally starve himself.
“It’s been well over a year now since he’s put any food in his mouth at all.”
Husband Matty as you can imagine is as passionate about raising awareness of ARFID and is taking on the Liverpool Half Marathon next month.
Emma who works as a Regional Finance Manager based at Novotel Paddington Village in Liverpool continued: “Matty is no runner but he’d do anything to help others understand what Oliver is going through. My employer Legacy Hotels & Resorts and Hotel General Manager Howard Lewis have also been so good in enabling me to work and maintain caring for Oliver. I’m so grateful.
All proceeds raised from Matty’s marathon efforts will go to Alder Hey Children’s Hospital and ARFID Awareness UK
Follow Oliver on socials…
Tik Tok: https://www.tiktok.com/@emsytaylor
Facebook: https://www.facebook.com/emsytaylor82 #oliversarfidlife
