Told they would never see a cure in their son's lifetime, a Lake Macquarie family is determined to help change the future for other children.
"This will form part of Spencer's legacy and how he has helped other young boys, and in some cases girls, with this condition," Tristram Cox said.
Mr Cox's seven-year-old son Spencer Cox was diagnosed with Duchenne muscular dystrophy (DMD) when he was four years old.
DMD is a genetic condition that causes a person's muscles to weaken rather than strengthen over time, and primarily affects young boys.
Hoping to raise funds for finding treatments and cures for serious conditions affecting kids, Spencer is one of the faces of this year's Children's Medical Research Institute Jeans for Genes campaign.
"It is not just about my family, it's about looking after everyone else's family and future generations," Mr Cox said.
After Spencer's birth, Mr Cox and Spencer's mother Harley Christensen started to notice he was late in reaching mobility and speech milestones.
"He even had some swallowing issues at a very young age," Mr Cox said.
Spencer was initially diagnosed with ADHD and dyspraxia before doctors found out that he DMD.
"It was a plethora of emotions, it was a lot to take in," Mr Cox said.
"I was in shock at the hospital, I could hardly speak or ask questions," he said.
Spencer's parents were told that by the age of 12 his legs wouldn't be strong enough to support his weight and he would need a wheelchair.
They were told he would likely live up to 30 years old before his lungs and heart stopped functioning properly.
"I felt very useless to be told that there was no cure and that his life expectancy would be dramatically shortened," Mr Cox said.
"The tone of the doctor was the same as if we were being told a terminal cancer with little to no survival rate," he said.
In year 1, Spencer struggles with a lot of fatigue and can't walk very far, he has difficulty with stairs and getting in and out of the car, Mr Cox said.
Spencer's parents decided to make him the face of a national campaign partly as way to explain his condition to him.
He got to put on a lab coat and and visit the labs at the Children's Medical Research Institute.
"So it was telling him he has this condition but also exposing him to the fact that there's people working to improve the lives of kids like him," Mr Cox said.
His Lake Macquarie primary school has got involved in the campaign with a fundraiser on August 6.
Spencer particularly enjoyed his principal asking for his autograph, Mr Cox said.
"Spencer is a very curious person, he likes to know how the world works," he said.
"I think being honest with him has helped him accept the reasons why he's a little bit slower."
His family was also throwing their own fundraiser at the Great Northern Hotel in Teralba on Saturday August 29.
"Our children should not have to suffer the effects and limitations of genetic conditions and diseases that are out of our control," he said.
To donate as part of Spencer's campaign visit: https://fundraise.jeansforgenes.org.au/fundraisers/teamspencer
