Our Story

We started ‘weaning’ at 6 months. We were so excited. We’re both big foodies who love to cook, so the thought of making purées and starting a food journey was beyond exciting to us - you literally get to teach a child how to eat and where food comes from. Incredible, we thought.

But it never really started.

You see, Gus wanted to hold the spoon. But he didn’t actually want any food in his mouth. When we look back I don’t know why we’re surprised — he never wanted anything in his mouth really. Toys, bottles, objects, hands — we were never worried leaving things lying around, because we knew he’d just look, inspect them, and move on.

So — friends, family, professionals assured us “don’t worry, children are all different - they develop at their own pace.”

Okay, we thought. He’ll get there. His appetite will come.

Fast forward a few months, filled with with no forcing just gentle tries. From Baby Led Weaning to purées. To mash and rusks. To boiled, stewed, baked and f*cking steamed - no matter what we put in front of him, he was not interested in putting it in (or near) his mouth.

From pressure-free play to exploration sessions — you name it, we tried it. The result was always the same. With a knowing look, and a discerning eye, he’d move things around, and simply say “no thank you.”

At least he was polite.

From broccoli to bread, to chocolate, crisps, chips and ice cream, it made no difference. This wasn’t fussy eating.

ARFID is a not only a whole different game, it’s a different sport altogether.

And not one we ever wanted to play.

We could go on forever about the nuances of his eating. From his limited safe foods to his need to eat alone. But the reality is, it’s the same habitual signs you’ll see in any ARFID kiddo — and there’s much more helpful things on this site that are worth reading.

Many of you have reached out to ask how we got an official diagnosis. Parents are so desperate for validation across the world, hoping it will help with getting their foot in the door to treatment, support and a pathway forward.

We have been to countless GPs (we moved a few times) and got the same confused looks and useless referrals that sent us to someone else, who referred us onward again… No answers. Like so many parents, the 6+ hours a day we spent getting food in him bite-by-bite meant that he was clinging on to the last percentile and therefore not throwing up any major red flags. It seemed like he wasn’t ‘urgent’ enough even though we could see him fading away.

This is not a bashing of the NHS by any means. Healthcare providers are under tremendous pressure in the UK, over worked and under valued — and largely in the dark about this insidious condition. More resources are desperately needed.

So, sat in the consult room of our 2nd attempt at a Private Pediatrician we eventually got an answer. He listened patiently for 10 minutes as we reeled off various examples of daily life and painted a picture of our sons habits and he said calmly - “It’s very clear your child has ARFID.”

We have to admit that we were very naive. We felt quite deflated thinking to ourselves, well we could have told you he was avoidant and restrictive about food. That much was obvious.

It was only when we went searching for more information and detail that we realised the severity of the situation, and it dawned on us that this is something he’ll likely never grow out of.

But it is something we’re hoping he can learn to manage, and with the right team, resources and support, feel comfortable in his own skin and thrive.

We created this site to compile the information we’ve spent countless hours reading. It’s made up of parents unique stories from around the globe and is intended to be a beacon of hope. We wanted to create a space online that would make ARFID parents and kids feel less alone. Somewhere with helpful tools, practical strategies and support.

It’s early days and this space will always continue to evolve as we learn more from professionals and parents everywhere. We hope you find it helpful, and if you see something missing, or have your own story to share - please reach out.

Sending love, hugs and kindness to all of you. The days are long, but you’re not alone.

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