161km Ruck for Harvey – Ultra-Trail Australia 100 Mile

My 2-year-old nephew Harvey has been diagnosed with an incredibly rare and devastating disease: POLR3A leukodystrophy.

This condition affects the brain and nervous system, causing a heartbreaking combination of symptoms — progressive difficulty with movement (ataxia, spasticity), intellectual disability, abnormal tooth development, short stature, delayed puberty, myopia, and trouble swallowing. There is no cure, and tragically, children with this diagnosis are often given only a few short years to live.

But Harvey isn’t like most kids.

He’s a fighter in every sense of the word.

Despite having only one working lung, Harvey somehow manages to go harder than most 2-year-olds. He refuses to be defined by his limitations. Recently, Harvey had a PEG feeding tube implanted to help with nutrition and swallowing — and he’s doing really well with it. Every day, he shows us what real strength looks like.

He’s backed by an incredible team: his brave 8-year-old brother Hunter, and their devoted mum, Tiffany. As a single mother, Tiffany faces the relentless reality of Harvey’s care while doing everything she can to give both boys a great life. Harvey’s medical needs mean she can’t work full-time, placing a huge financial and emotional strain on their family.

This fundraiser is about giving Harvey, Hunter, and Tiffany something simple but powerful:

time together as a family.

We’re raising funds to send them on a special trip to Taronga Western Plains Zoo later this year — a chance to make happy memories, see the animals, laugh, explore, and just be a family away from hospitals, appointments, and constant worry.

To help make this happen, I’ll be taking on the 161km Ultra-Trail Australia 100 Mile in the Blue Mountains, carrying a weighted pack for the entire course.

Rucking means covering long distances with weight on your back — and it’s symbolic of the burden Harvey carries every single day. I’ll be running and rucking to make sure I reach the finish line within the cutoff time, every step in honour of Harvey’s resilience.

This challenge is open to everyone. UTA offers distances for all fitness levels.

Run. Walk. Ruck.

Can’t make it to the actual event? Join in from home — choose a distance and move for Harvey.

If you can, please donate. Every contribution brings this experience closer for Harvey and his family.

And even if you can’t donate, sharing this page means more than you know.

Let’s show them they’re not alone — and that Harvey’s fight inspires all of us.