Remembering Liam, and the challenge that inspired a community
“He was just a gorgeous boy. He was always happy. He loved the sound of whistles. He liked watching TV. He just really liked life,” says mum Natasha from Ayrshire in Scotland, remembering her son Liam who died peacefully in October 2025.
Liam lived with a rare and progressive neurological disorder, called BPAN that, through an accumulation of iron in the brain, gradually took away his ability to walk, talk or eat independently. But to all those who truly knew Liam, he’s more likely to be remembered for his contagious smile, his beautiful curly hair, and his ability to find joy in the world around him.
He would get dragged around to festivals with me. He would get taken up a mountain in a gondola. He would get pushed around the ice-skating rink. And he just loved all of it. I used to think, if I can make it, a wheelchair can make it. And that’s just how we went about life.
Natasha, Liam's mum
Living with a progressive condition
As Liam grew older, Natasha says that joyful innocence and gentle nature slowly started to dim.
“During the last year of his life, he endured repeated illnesses and long periods of sickness,” she explains. “I feel like he had spent half of his last year with a sickness bug. I could see he was on a downward trend, and I just didn’t want him to end up in an emergency situation where we were trying to save him and we just couldn’t. That would have been my worst nightmare.”
Throughout Liam’s childhood, he periodically spent time at Robin House, run by Children’s Hospices Across Scotland (CHAS). Natasha used the time to rest and recharge, going on her own outdoor adventures and spending time with Liam’s older brother, Kieran.
Liam quickly made an impression on everyone he met. “He had the most beautiful eyelashes and such a beautiful smile.”
But he also had a mischievous side, laughs Natasha. “He would give you ‘the side eye’ if he didn’t want to do something. Just like a teenager.”
A peaceful goodbye
Liam died shortly after his 13th birthday. Although Natasha was never ready to lose him, she takes comfort in knowing he was surrounded by love right until the very end.
“We’d been on a family trip to Loch Ness for his birthday, stayed in a cabin, he’d been up the gondola again. Then a few days after we got back, we’d been out for a family meal together for my birthday. And at that moment I think he just felt there was no more unfinished business.”
When the family awoke in the morning they discovered Liam had died in his sleep.
In the days after Liam’s death, the family received a grant from Together for Short Lives towards keepsake necklaces made using Liam’s fingerprint and a ring containing his ashes, along with duplicate necklaces for brother Kieren and Natasha’s partner Ben. She says she wears it every day.
For Ben, seeing how that support had benefitted Natasha now became a powerful motivation.
“It was a very direct way of seeing how support like that impacted someone’s life. That’s really where the idea of doing something in Liam’s memory came from,” he says.
We’d put him to bed like normal, he got cuddles and he got a kiss goodnight. Then just like that he was gone.
mum Natasha
Walking for Liam
Before Liam died, Ben had previously raised money for CHAS by walking the West Highland Way in under three days. Now, he wanted to do something even bigger. Something that would benefit children like Liam right across the UK.
Ben set himself an extraordinary challenge: walk the entire 96-mile West Highland Way without stopping to sleep in under two days. He chose to fundraise for Together for Short Lives.
“Because of what Liam and Natasha went through – their strength at just getting through everyday life. I had that in my head all the time, and also that Liam would have loved to have been able to do the kind of thing I was even attempting.”
Natasha and Ben had first met through a Facebook group for solo walkers in Scotland. Soon they began to share many of the same friends and, as their relationship blossomed, Ben couldn’t help but admire the way Natasha and Liam embraced life together.
“They were just always out doing stuff; going to festivals, events, getting outdoors. Basically, doing more than I was managing as a single guy, and I was kind of blown away by that.”
Now, to Ben’s surprise and delight, those same friends rallied around to create a support crew for him on his challenge. People offered to walk sections of the route with him, prepared meals, dry his equipment and organised checkpoints.
So when Ben set off in late summer of 2026, despite brutal conditions including driving rain and paths that had literally become rivers to wade through – he knew he wasn’t alone.
“It became this whole community thing where everyone wanted to help. That, and remembering all the challenges Liam faced, is absolutely what got me through,” says Ben.
Liam’s legacy
At the finish line, and after more than 36 hours of almost unrelenting wind, rain and sheer determination, there was just one more life-changing event on Ben’s mind. He dropped to one knee and proposed to Natasha. And happily she said ‘yes’!
Since that day Ben has raised more than £4,000 for Together for Short Lives through his JustGiving page, with some donations even coming from complete strangers who had read about it in the paper.
But Ben is far from finished – he wants to make it to £5,000! You can support his next fundraising challenge, which involves wearing a kilt, by following @project96whw on Instagram.