Finding out their son Spencer had a life-limiting condition was incredibly tough for 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’,’’ dad Tristram said.
As a baby, Spencer appeared healthy. But as he grew, he began missing milestones and showed severe muscle weakness. After therapies and blood tests, Spencer was diagnosed with Duchenne muscular dystrophy at just four years old.
Duchenne muscular dystrophy is a genetic condition that causes progressive muscle deterioration. Most children lose the ability to walk by 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.”
For Harley and Tristram, one of the hardest parts was learning what Spencer’s future could look like.
“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.’’
When the family visited the Gene Therapy Research Unit at Children’s Medical Research Institute, they finally found some hope.
“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,” Tristram said. “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.’’
For Tristram, seeing the labs gave their family a sense of 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.”
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