Spencer
Finding out that their son Spencer had a life-limiting condition was very tough for parents Harley and Tristram – but discovering there was no cure was devastating.
“My father… gave me the best piece of advice, which was,
you now have one job, which is just to give him the best life that you can’,"
Spencer is one of the 2026 faces of Jeans for Genes, the iconic fundraising day that supports research at Children’s Medical Research Institute (CMRI).
As a baby Spencer appeared to be healthy, but as he grew, things changed. Spencer wasn’t reaching a few milestones and displayed severe muscle weakness, which prompted therapies and blood tests.
At the age of four he was diagnosed with Duchenne muscular dystrophy, a genetic condition that causes progressive muscle deterioration. Most children lose the ability to walk by the age 12 and life expectancy is shortened due to heart and respiratory complications.
“I think we were just stunned because it wasn't anything on our radar," Mum Harley said. “It's hard to take the diagnosis when he seemed fine.
“I think the most devastating thing was to learn the specifics of his timeline. The doctors were highlighting –
by this age he'll be in a wheelchair, by this age he will need assistance in breathing and basically it will be a shortened life span. Which was one of the hardest things to deal with."
Tristram said finding out there was no cure was the hardest part.
“We were basically delivered the news that there's not much in terms of a cure yet. And I think that was the hardest thing emotionally to take on – that there's no real treatment."
When the family visited the Gene Therapy Research Unit at CMRI, they finally found some hope for the future.
“The initial advice that we got from the hospital was that there is a lot of research for Duchenne but it's probably not going to be something that he will see in his lifetime. And that's another reason why we wanted to do Jeans for Genes, because this is almost Spencer's legacy in that he will be helping future children in the same position."
Tristram said visiting the labs gave them purpose.
I felt privileged visiting the research labs because it's kind of tucked away from the community."
"We don't think about it very often and to see that it's a proper functioning lab, to know that fundraising is going towards that was incredibly special.
"It's nice as well to talk to someone in the lab who has a vague idea of what you're going through and what all the work's for. It was also special for our son Spencer to go in because he'll look back on this as something that we did that was important."
Tristram said getting behind Jeans for Genes was vital.
I think Jeans for Genes is incredibly important because research funding isn't always guaranteed."
"It's important that the community are well educated on what it takes to conduct that research because any kind of delay in a breakthrough will be the breaking point between having a very high quality of life and a substandard quality of life for various genetic conditions.
“I think that progression has only really happened though because of organisations like CMRI. Without those organisations, I don't know how far back we would be in the research."
Jeans for Genes is one of Australia’s longest-running charity days and this year it will be held on Thursday 6 August.
Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, get active by walking, running, or skipping or simply wear jeans – just like millions of Australians have done for more than 30 years.