Feeding Rune: How Real Food Helped Our Son Thrive – and Sparked a Movement

Our son Rune is nearly six. He lives with a rare neuromuscular condition called Nemaline Myopathy, which affects his movement and strength. He needs round-the-clock care, someone awake even through the night to manage his ventilator, medication, and medical equipment.

But the biggest threat to Rune’s health hasn’t been his condition. It’s been what he was being fed.

Formula Nearly Broke Him
For the first few years of his life, Rune was in and out of hospital. He suffered from constant vomiting, painful tummy issues, repeated chest infections, and dangerous aspiration (when food or liquid enters the lungs). These episodes were terrifying, and they were all made worse by the “nutritionally complete” formula feeds he was given through his feeding tube.

These formulas, the kind given to most tube-fed children and adults in the UK, are ultra-processed and heavy in dairy. For Rune, they made everything worse. He was deeply unwell, and we were told this was just part of his condition. But what if it wasn’t?

Let’s be clear formula isn’t the enemy. For many people, it’s an absolute lifeline. It saves lives. It provides critical nutrition in a manageable, measurable, and medically supported way. This isn’t about demonising formula, it’s about recognising that one size doesn’t fit all. And for too long, that fact has been overlooked.

The Real Food Revelation
After one particularly rough hospital stay, we started researching alternatives, and that’s when we discovered the blended diet. In simple terms, it means blending real, cooked food so it can go through a feeding tube. It’s more common in places like the US, but at the time it was almost unheard of in the UK due to old guidelines and fears around safety.

That’s changed in recent years. New evidence and updated NICE guidance now support the use of real food blends in medical care. Why? Because people do better. It’s not just about calories, it’s about what those calories are made of, how they digest, and how they make you feel.

Think about how you eat. Smelling, tasting, chewing, it all signals your body to start digesting. Tube-fed individuals miss out on that entirely, which means their bodies have to work harder. And if all they’re being given is sweetened shakes or oil-heavy blends, it’s no wonder they struggle to thrive.

Trial, Error, and Transformation
We had a lot to learn. Creating tube-friendly meals isn’t just about chucking leftovers in a blender. It takes careful attention to texture, nutrition, timing, and safety. But with help from open-minded professionals and a lot of research, we began to build blends tailored for Rune’s needs.

And the change was incredible.

The vomiting stopped. The chest infections slowed. His bowels started to work more normally. He had more energy for therapy. And for the first time in a long while, Rune felt more like himself.

This wasn’t just a lucky break. Study after study shows that real food can offer major benefits for tube-fed people, especially children, where most of the research has focused so far. But the logic applies to adults too. Imagine being used to eating normal food your whole life, only to be switched to synthetic-tasting formula with no smell, no flavour, no connection to the food you once loved. What does that do to your appetite? Your wellbeing? Your sense of self?

Food Is Connection
In our home, food isn’t just fuel. It’s comfort. It’s an experience. It’s care.

When Rune first started tube feeding, his feeds were done in private, away from the dinner table. That’s what his school and carers had been taught, to keep it discreet, hidden. But we didn’t want Rune to feel ashamed about how he eats. He deserves variety, flavour, and choice just like everyone else.

So we brought him into the heart of mealtimes.

Now, Rune shops with us. He picks out vegetables by smell and colour. He helps decide what goes into his blends. And incredibly, he’s even started tasting small amounts of purée by mouth, something we never imagined would be possible. He’ll always use his feeding button, but now he calls it his “power-up button.” He’s proud of it. And so are we.

From Personal Journey to Shared Purpose
Rune’s journey changed how we think about food, not just as nutrition, but as comfort, culture, and connection. We began to see how many tube-fed people, like him, are offered only one option: formula. For many, it’s essential. But it shouldn’t be the only choice.

Plenty of tube-fed people can still taste, smell, and even enjoy small amounts of food by mouth. So why shouldn’t they have access to real ingredients, varied flavours, and meals that reflect the same dignity as those who eat by mouth?

Together with a close family friend, we’ve started a small company Food Untethered, not just to create meals, but to rethink what it means to eat when you’re tube-fed. Our aim is to support those on liquid diets to live fully, with options that nourish both body and spirit.

This all started with Rune, but it’s something so many others deserve too.

Sophia Johnston
Co-founder of Food Untethered
Parent carer for Rune Johnston
www.fooduntethered.com
contact@fooduntethered.com
07846690988