Mum issues warning to other parents after losing son to rare eating disorder ARFID
Warning: This article contains discussion of eating disorders which some readers may find distressing.
A grieving mother has issued a warning to other parents after losing her son to a rare eating disorder, avoidant/restrictive food intake disorder (ARFID).
Beat Eating Disorders explains that ARFID is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.
"Anyone of any age can have ARFID," the website outlines, adding that it occurs in children, teenagers and adults.
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"Although people with ARFID may lose weight or have low weight, this is not a criterion for ARFID. It can occur at any weight and varies in different people."
The NHS notes that beliefs about weight or body shape are not reasons why people develop ARFID, adding that possible reasons for ARFID include:
- negative feelings over the smell, taste or texture of certain foods
- a response to a past experience with food that was upsetting, for example, choking or being sick after eating something
- not feeling hungry or just a lack of interest in eating
"He was full of magic. He was beautiful. He was soft. He was calm. And he would just smile all the time," Lucy Morisson explained to ITV News, speaking of her late son Alfie.
But five years ago, Alfie passed away at the age of seven from malnutrition caused by the undiagnosed eating disorder.
Lucy continued: "Alfie would choke, he would vomit, he would hit himself. Sometimes Alfie would not eat at all. Drinking was just as difficult.
"I would have to place the water onto his hand, and Alfie would lick his hand."
She explained that Alfie always had issues with eating, but believes that a range of professionals involved in his care weren't able to see past his autism.
"I honestly thought it must have been me because I was aware Alfie died from malnutrition, but I wasn't aware that it was from an eating disorder called ARFID," Lucy carried on.
"And the hardest part is then, as a parent who is going asking for help, not once, not twice, but for seven years, it was this full lifetime, to be shut down constantly, then you start to believe, 'Oh, maybe this is his autism.'"
The coroner at Alfie's inquest agreed with Lucy, who had sent a prevention of future deaths report to several authorities involved in his care.
But five years since Alfie's death, Lucy doesn't believe much has changed.
"Do you feel like this could happen again to someone else?" an ITV reporter asked Lucy, to which she responded: "Absolutely, because it's already happened again.
"Honestly, I know change doesn't happen overnight, but how can we not be further than we already are?"
If you've been affected by any of the issues in this article and would like to speak with someone in confidence, call the BEAT Eating Disorders helpline on 0808 801 0677. Helplines are open 3pm-8pm Monday to Friday. Alternatively, you can try the one-to-one webchat.
Topics: Parenting, Health, Explained, Advice, Food and Drink
Rhiannon Ingle