UPDATE: HE SMASHED IT… AND NOW HE’S DOUBLING THE DISTANCE! ‍♂️

13.1 miles. 1 hour 43 minutes. DONE. ✅

When we first started this fundraiser, George took on the half marathon for our gorgeous Chester — and he absolutely smashed it.

Every mile was for Chester, for his journey, and to help raise awareness and vital funds for Prader-Willi syndrome.

But apparently 13.1 miles wasn’t enough…

NEXT UP: THE FULL MANCHESTER MARATHON ‍♂️

26.2 miles | April 2027

George has decided to take on his biggest challenge yet and DOUBLE the distance by running the full Manchester Marathon.

So, we’re keeping this GoFundMe OPEN and continuing to raise as much as we possibly can.

Chester was born 7 weeks early and has Prader-Willi syndrome, a rare genetic condition that means milestones can take him longer to reach.

But if there’s one thing Chester continues to show us, it’s determination.

Every little step is a huge achievement — and now George will be taking thousands and thousands of steps for him.

If you’ve already donated, shared our page or supported George through his half marathon, THANK YOU. You helped make the first challenge so special.

And if you’d like to support the next one, every donation — no matter how big or small — means the absolute world to us.

13.1 miles completed. ✅

26.2 miles next. ⏳

All for Chester’s Little Steps.

Manchester Marathon… we’re coming for you. ‍♂️

Please keep donating, sharing and following Chester’s journey.

OUR STORY-

Hi, my name is Ellis, and I’m Chester’s very proud auntie.

I’ve set up this GoFundMe on behalf of our wonderful friend George, who has very kindly decided to take on the Manchester Half Marathon – 13.1 miles – in honour of my nephew Chester, raising money directly for Prader-Willi Syndrome Association UK (PWSA UK).

George is taking on the Manchester Half Marathon for a little boy who is working incredibly hard to take steps of his own.

His name is Chester.

He’s three years old, cheeky, beautiful, determined beyond belief and quite honestly one of the happiest little boys you could ever meet.

Chester also has Prader-Willi syndrome (PWS), a rare and complex genetic condition that affects many aspects of his everyday life.

When Chester was born, our family was suddenly introduced to a world we knew absolutely nothing about.

Before he’d even had the chance to show us who Chester was, we heard so many things he may not do.

Walking. Talking. Attending a mainstream school.

There were suddenly so many may nots attached to this tiny little baby who hadn’t even been given the opportunity to figure out the world yet.

But Chester has spent the last three years teaching all of us something incredibly important.

Don’t tell him what he can’t do. Just give him the time to show you what he can.

Chester’s little steps

At three years old, Chester’s development looks different from that of a typical three-year-old.

He isn’t walking or standing independently yet and he needs support to get around. Only recently, he’s started trying to crawl.

To somebody else, that might seem like a small milestone.

To us?

It’s enormous.

Because we’ve watched how hard Chester works for every single achievement.

Things most of us never have to think twice about can require incredible strength and determination from him.

And still, he tries.

Again.

And again.

And again.

Usually with the biggest smile on his face.

That’s Chester.

He doesn’t know that he’s supposed to be behind.

He doesn’t know that something is supposed to be difficult.

He just knows that he wants to get somewhere – and he’s going to keep trying until he does.

His milestones might come later.

His journey might look different.

His steps might be smaller.

But they’re Chester’s little steps, and every single one deserves to be celebrated.

It’s exactly why his mum created Little Steps with Chester on TikTok and Instagram.

It’s a place to document Chester’s journey, celebrate every achievement and show people the reality of raising a little boy with Prader-Willi syndrome.

Because Chester isn’t a sad story.

And we don’t want anyone to read this and feel sorry for him.

Quite the opposite.

We want you to know him.

The cheeky little boy behind the diagnosis.

The little boy who laughs, loves life and somehow manages to melt practically everybody who meets him.

The little boy who has already taught the people around him more about determination than he’ll probably ever realise.

Prader-Willi syndrome is part of Chester.

But it does not define him.

Why awareness matters

Prader-Willi syndrome is a rare genetic condition that can affect muscle tone, development, growth, hormones, learning and behaviour.

It can also affect the way the brain regulates appetite.

As children with PWS get older, they can develop an overwhelming drive to eat because their brain doesn’t properly signal that they’ve had enough food.

Imagine finishing a meal but never receiving the message:

“I’m full.”

Something as ordinary as food can therefore become something families living with PWS have to think very carefully about.

And that’s one of the reasons we desperately want more people to understand this condition.

Offering a child a sweet might feel like the most innocent gesture in the world.

But you don’t always know the story of the child standing in front of you.

You don’t know whether food has to be carefully managed for their safety.

You don’t know whether that seemingly tiny gesture could make things incredibly difficult for that child and their family.

We aren’t expecting to change the world overnight.

But we can make people stop and think.

We can talk about healthier and more inclusive choices for children.

We can help make the words Prader-Willi syndrome a little less unfamiliar.

And we can help families affected by PWS feel a little more understood.

That’s why George is running.

George is taking on the 13.1 miles of the Manchester Half Marathon in honour of Chester and to raise money directly for Prader-Willi Syndrome Association UK (PWSA UK).

Every donation made through this fundraiser will go directly to PWSA UK to support their work with people affected by Prader-Willi syndrome and their families.

And there’s something about this particular challenge that feels incredibly special to us.

Because while George trains his body to carry him through 13.1 miles, our Chester is working incredibly hard towards steps of his own.

One is training for miles.

One is working towards his own little steps.

Both require determination.

So we’re asking you to get behind them.

If you’re able to donate – whether it’s £2, £5, £10, £13.10 for George’s 13.1 miles, or anything you can comfortably afford – we would be incredibly grateful.

Not because we want you to feel sorry for Chester.

Please don’t.

Donate because children like Chester deserve to grow up in a world that understands them.

Donate because families living with rare conditions deserve support.

Donate because organisations such as PWSA UK can only continue their work when people get behind them.

And donate because one little boy has inspired somebody to put on his running shoes and take on 13.1 miles in his name.

And if you can’t donate, you can still help us.

Share this page.

Tell somebody about Prader-Willi syndrome.

And please follow Little Steps with Chester on TikTok and Instagram.

Follow his journey.

Watch him grow.

And celebrate those little steps alongside us.

Because one day we’re going to get to share a moment we’ve been working towards since Chester was tiny.

Chester taking his first independent steps.

Not if.

When.

And when that day comes, there will hopefully be an awful lot more people who understand just how much work went into every single one of them.

Until then, we’ll celebrate every attempt, every crawl, every achievement and every little step that gets him there.

Because Chester has already taught us:

Different doesn’t mean less.

Later doesn’t mean never.

And sometimes the smallest steps are actually the biggest achievements.

George has 13.1 miles of steps ahead of him.

Chester has his own little steps ahead of him.

And we’re going to be cheering them both on every single one of the way.

For Chester.

For PWS awareness.

For PWSA UK.

And for every little step still to come.

Thank you for donating, sharing and becoming part of Chester’s journey.

Little Steps with Chester

LITTLE STEPS WITH CHESTER - TIKTOK

LITTLE STEPS WITH CHESTER - INSTAGRAM