Archie Kynaston, 14, likes lawn bowls, building Lego and dancing.
He has two siblings and sometimes feels like he has to protect his eight-year-old brother Jensen.
Archie takes medicine and steroid injections every day. Seven years ago, he was diagnosed with Duchenne muscular dystrophy and six months later, so was Jensen.
On Sunday, Archie's great uncle Chris Brigg will push him 21 kilometres in a stroller wearing matching bright yellow shirts.
Kids first, condition second
Archie knows his prognosis.
One day he will be in a wheelchair and his life expectancy is at least half of his peers.
"I have to do more things differently than others, and take precautions in doing things.
"I'm just physically different, not anything else."
The bubbly brothers and their family have taken it upon themselves to champion awareness of the condition.
Since 2015, their mother Jacqui Kynaston has read all the available research on the rare disease.
"We've got two little boys that are good faces of the charity and condition so anything we can do to help other families, it's worth it."
Mrs Kynaston said as the boys got older, they would lose their ability to walk.
"At the moment they're amazing.
"Archie is 14 and walking so much … usually they're in wheelchairs by now."
The 14-year-old said the idea of being in a wheelchair was second nature, and although it scared him sometimes, he said that was not a bad thing.
Mrs Kynaston said what Archie knew about the disease had been led by him.
"We're very open if they ask a question."
Raising awareness
Chris Brigg said many members of their family, distinguished by their bright yellow shirts, would be running in events on Sunday.
"We were originally hoping to do the City to Surf in Sydney," he said.
However, those plans were put on hold due to COVID-19.
Two years on, the duo will take on the Mackay Marina Run.
"It's a great experience … the run is one of the largest half marathons in regional Queensland.
"We ran on the weekend and someone yelled out Archie's name as we went past so he must have a few followers."
Mr Brigg said he watched the news for trials underway in other countries, and hoped one day the same opportunities would be available for Archie and Jensen.
Superheroes
The family runs a charity to support the boys to live with the disease, whether to help with medical expenses or modifications to their home or car.
Donations from the community are the reason Archie can participate on Sunday.
Mrs Kynaston said navigating NDIS was a challenge.
"We have a car that we're getting modified, and it's not going to Melbourne until December."
Mrs Kynaston said the family had an amazing support network.
"Lots of family and friends lift us up and help us keep going.
