A fundraiser established by the mother of three-year-old Charlie Stevens, who died from acute myeloid leukaemia (AML) in Adelaide, has raised more than $55,000 for cancer research in just 28 days.
The Charlie's Rainbow Move Challenge invited participants to undertake their own physical tests throughout February to raise money for paediatric cancer research at the University of South Australia.
Some committed to major feats, including Adrian Isbill, who raised more than $19,600 by running, riding and rowing 512 kilometres — the distance he transports his son, George, from Broken Hill to Adelaide for chemotherapy.
Others learnt how to do handstands, twirl hula hoops with their feet while upside down, or did more sit-ups, squats, or push-ups than they had ever done before.
"It was totally different to what my original vision for it was, but everyone was choosing something that did it for them," Charlie's mother, Kelly Stevens, said.
"Everyone would either do their own workouts, or their own running or riding, or whatever they chose to do, and we would all post it on this [social media] page.
A 'stone' that's always there
Charlie started getting sick at 12 months with a snotty nose and watery eyes, something that Ms Stevens and her husband, Michael, didn't consider abnormal for a child of that age at first.
But three months later he developed a small lesion on one eye.
Scans and tests revealed he had AML, a cancer that affects the blood and bone marrow.
It led to 18 months of intense treatment that had medical staff at times fearing the worst, despite Charlie making them his friends and "playing and laughing" throughout the gruelling process.
In January 2020 and with treatment complete, Charlie's cancer went into remission.
But six months later he relapsed, with the cancer having moved from Charlie's bone marrow into his spinal fluid.
The family relocated to Victoria for bone marrow transplants, having to leave Charlie's older brother at home with his grandparents due to COVID-19 restrictions.
Eighty-six days after his transplant Charlie died.
He managed to spend five days back in Adelaide among his own toys and sleeping in his own fire engine bed before he passed in January 2021.
"I don't think anyone can really understand quite how hard it is to lose a piece of your heart and know that it's never coming back, and for our six-year-old to lose his brother" Ms Stevens said.
Ms Stevens referred to an analogy about a stone that is always in your pocket.
"It depends on the direction you're moving as to whether it's pushing hard against you and making you really upset, or whether you can just have that underlying, dull feeling, in that you know it's there, but it's not affecting you today," she said.
'It hurts less'
Ms Stevens wanted to do something towards supporting cancer research and met with UniSA researchers in August last year, including professor Richard D'Andrea, about raising money for the cause through a university-backed initiative.
The idea of using personal fitness as a fundraising driver evolved from the fact she had been working out to keep herself mentally strong.
"I stay busy, because it hurts less," Ms Stevens said.
Dr D'Andrea has been researching in the AML field for 25 years and started focusing on childhood AML five years ago in collaboration with others, including paediatric oncologist Andrew Moore from Queensland.
Surprised by the amount Charlie's Rainbow made in such a short time frame, Dr D'Andrea said the "amazing effort" was an inspiration for his team.
"We hear the devastating stories from Kelly and other AML families that have connected with our group and we can really sense the passion that they have to do something to improve outcomes for other patients and families," he said.
"The amount of funding raised is really significant and is so important for our research efforts, as it gives continuity of funding, which is a real challenge for all medical research groups — especially those working on childhood cancers that are relatively rare."
Dr D'Andrea's team has recently published a peer-reviewed study that found up to 20 per cent of AML patients have certain genetic characteristics that indicate a family predisposition, or sensitivity to chemotherapy, which could be otherwise unknown.
They were now working with Sydney's Zero Childhood Cancer program to implement the findings so all newly diagnosed childhood AML patients were comprehensively tested using genetic technologies to ensure they had the best and safest possible treatment.
"The input from patients and families is also important as it highlights to us what patients see as the most important issues, helps us stay focused, and is actually something that we can point to in our research grant applications when we are justifying our research proposal," Dr D'Andrea said.
Charlie's Rainbow is still taking donations.
