Peter “Evo” Eveleigh on life with a terminal condition, tube-feeding and the stuff that truly matters.

One of Peter Eveleigh’s favourite things to do is watch his five-year-old son, Oliver, zoom around on his scooter. “Especially down the car ramp,” says Peter from his Exeter home in Devon, South West England. “One of the unexpected perks of having a wheelchair!”

In November of 2022, this young husband and father was diagnosed with motor neurone disease (MND), a rapidly progressing condition that causes muscles to weaken, stiffen and waste, which can impact how you walk, talk, eat, drink and breathe. MND is treatable, but not yet curable – and significantly shortens life expectancy.

“It’s been a rollercoaster couple of years since my MND diagnosis, but we’ve found a rhythm that works for us,“ says Peter, known as “Evo” to his large and loving community of family and friends. “[My wife] Jess and I make a good team and Oliver keeps us on our toes — and laughing.”

Alongside Team Evo, Peter started the awareness-raising project, Mind over MND. Here is where you’ll discover that MND is not, as it is often referred to, a “rare” condition. There’s a 1 in 300 chance of getting MND across a lifetime. And while it’s more likely to affect those over 50, it can appear in adults of any age.

At 33, with an unknown future ahead, Peter is enjoying story time, trips to the park and the “little everyday moments” with his family.

Here, he shares some of what he’s experienced and learned in recent years – and advice gleaned from his foray into tube-feeding.

MND impacts everyone differently. What does it look like for you?

For me, MND has gradually taken away the ability to speak and move independently. I now use a wheelchair full-time and communicate using eye-gaze technology and a custom digital voice. Eating by mouth became too dangerous due to swallowing issues, so I’ve been tube-fed for about six months now. It’s a relentless disease, but I try to focus on what I can still do – and how I can use my experience to help others.

When did tube-feeding come into your life and how does it help you?

I had my PEG [percutaneous endoscopic gastrostomy] feeding tube placed in 2023 and began using it consistently about six months ago. So far it hasn’t needed to change, though I know some people transition to a low-profile “button” later on. We’ve gotten into a solid routine with it, so it’s working well for now.

Before that, eating became really difficult – not just physically, but mentally and emotionally too. I was exhausted after meals and constantly worried about choking. Tube-feeding has taken that fear away and made nutrition manageable again. It’s not the path I expected, but it’s given me a sense of safety and stability.

How did you and Jess feel about the prospect of you having a feeding tube?

At first, it felt like a really confronting step. It made everything feel a bit more ‘real’, like we were entering a new phase of the illness. There was also some fear around the procedure itself and how it might affect our day-to-day life. But once we got past that and saw the benefits, it became just another tool – one that helps me stay healthy and present. Jess, as always, took it in stride and became a total pro at managing it all.

How did you explain the concept of tube-feeding to your young son, Oliver?

We try to be really open with Oliver. We explained that Daddy’s muscles don’t work the way they used to, including the ones that help with eating, so now my tummy gets food through a special tube instead. He was curious at first but accepted it quicker than most adults would. Sometimes he even helps bring over my blends — it’s just normal life to him now. Kids are amazing that way.

What does tube-feeding look like for you nowadays?

Most of my nutrition comes from Wilbo’s Blends – high-calorie, whole-food meals that Jess prepares in advance. We don’t use the standard feeds provided by the health service, which I find a bit odd, to be honest.

The government is constantly promoting healthy eating, yet when someone can no longer swallow, the default is basically a bottle of milk and chemicals. That just doesn’t sit right with me. I totally get that those feeds work for others – and that’s great – but for me, real food feels better, both physically and mentally.

We hook me up a few times a day using a syringe. Jess has got it down to a fine art now and we’ve built our days around a routine that works.

Thinking back on your early days and weeks of tube-feeding, how do your feelings about your feeding tube compare now?

In the beginning, it felt like giving up something important – like a piece of my independence or identity. I remember early on getting a phone call from a dietitian who very matter-of-factly said, “Eventually we’ll fit a PEG”. There was no warmth or sensitivity – just clinical language, like it was just another job on his list. But for me, it wasn’t routine. I’d only just been told I was dying a few weeks earlier and it felt like yet another blow. That moment really stuck with me.

But over time, my perspective shifted. Now I see the feeding tube as empowering. It keeps me strong, nourished, and less anxious about something that used to be a daily struggle. I don’t think of it as a symbol of decline anymore – it’s just part of how I live, and thrive, with MND.

What has helped you – both practically and emotionally – in your tube-feeding experience?

Jess has been incredible – she’s my rock and my carer and handles so much behind the scenes. Having the right equipment makes a huge difference too – pre-prepped blends and proper storage help make it manageable. Emotionally, talking to others who’ve been through it helps a lot. That’s why I share so much online – it creates connection and reminds people they’re not alone.

Advocacy has become a huge part of your life – and that of your friends and family as part of Team Evo, too. What advice do you have for people who are new to this experience and want to rally support and raise awareness, as you are doing?

Start small – share your story with honesty and heart. People connect to realness. I started Mind Over MND with a few friends as a way to stay positive and push back against the fear that can come with this diagnosis. And it’s grown into something really special. Whether you’re raising money, spreading awareness or just making people feel seen – it all matters. Community is everything.

How has navigating MND with your family and friends shifted your perspective on life?

MND has stripped away a lot – but in its place, it’s revealed what truly matters. I’ve learned to live in the present, to appreciate the quiet joys and to let go of things I used to stress about. Seeing life through Oliver’s eyes keeps me grounded. He doesn’t see MND – he sees Dad. And honestly, that’s been the biggest lesson of all: love isn’t limited by ability.

A big shift for us recently was the completion of our home extension, which has made life significantly safer and easier. Thanks to support from the local council, we now have accessible entry, a downstairs wet room and more space to move around – especially important as my needs have changed. But the council grant didn’t cover everything, and we were incredibly lucky that people stepped in to help fund the rest.

Friends, family, and even strangers doing their bit made a massive difference. It’s a humbling reminder of the power of community and kindness.

What advice do you have for people who are new to the experience of tube-feeding as an adult?

Give yourself time to adjust. It’s okay to grieve the change – but don’t let fear or stigma stop you from embracing the benefits. Learn as much as you can, ask questions and lean on others who’ve been through it. It doesn’t define you – it just supports your life.

If there’s one thing I’ve learned it’s that the brain is more powerful than most people realise. Even when your body starts to fail, your mind, your heart and your sense of purpose can keep going. Always have hope – because there’s always something worth holding on to.

Brain Power