Declan Kane’s four-year battle with cancer began shortly before his fourth birthday, and his fight was more than heroic. His father, Simon, describes Declan as a true superhero – and he says the same goes for any child undergoing grueling treatments for this horrific disease.
It’s this superheroic fight that is the inspiration behind an annual fundraising event that Simon and his family launched in 2016 – Superkids Superheroes.
Superkids Superheroes event is a 10-day, 600km road trip from the Kane’s home of Bridgetown in Western Australia to the state’s capital. It is held every year in September, during Childhood Cancer Awareness Month, and money raised is donated to The Kids’ Cancer Project.
The event is also a special way for Simon, his wife Kim, and sons Brodie and Kieren, to honour the life of Declan, who passed away on 18 May 2017.
Declan was diagnosed with neuroblastoma in 2013. His early symptoms mirrored growing pains, such as aches in his legs, and progressed to severe abdominal pain.
“We went to Bunbury hospital and they removed his appendix because they thought it might have been an appendicitis inflaming as his pain was coming and going,” says Simon.
“The pain got much worse after that, and we took him back to Bunbury again. They did some scans, and then put him on the Royal Flying Doctors service and sent him to Perth. After more tests there, they told us he has high-risk stage four neuroblastoma.”
Reeling from the shock diagnosis, the Kane family relocated to Perth while Declan underwent 18 months of treatment, which included chemotherapy, surgery, a stem-cell transplant and radiation.
“Declan was also part of a trial for immunotherapy,” says Simon. “We got on top of it and there was no evidence of disease for about six months but, just before Christmas 2014, it came back.”
While searching for other treatment options, Simon and Kim came across a DFMO clinical trial for children with relapsed high-risk neuroblastoma.
With funding from The Kids’ Cancer Project, the study aimed to establish the maximum tolerated dose of the drug DFMO, in combination with other drugs, to the develop more effective treatments.
“The DFMO trial treatment was working,” says Simon. “The cancer was shrinking like it was just about ready to melt away, but then the neuroblastoma found a way back in.”
A superheroic road trip
The idea for the Superkids Superheroes fundraiser came about during a conversation between Simon and his friends.
“I wanted to do something to raise money that no one else was doing,” he says. “Kids love superheroes and they love riding scooters, so I thought, ‘let’s put the two together’. I’ve also seen that it’s the kids fighting cancer who are the real superheroes.”
The annual 600km event kicked off in 2016 with five motorised scooters. By the following year, it had grown to 16 scooters.
Along the journey, Simon and his team stop at schools, where children greet them dressed as their favourite superheroes.
“We visit about 12 schools along the way and ask for gold coin donations,” says Simon.
Today, the Superkids Superheroes event attracts corporate sponsorship from the likes of insurance giant QBE and Bendigo Bank. As participation has grown, the event has received funding for more scooters, as well as fuel sponsorship.
“We’ve also got maintenance and support crews that come along with us,” says Simon. “And the community support has been fantastic. Before Declan was diagnosed, you always watched the news and you'd see bad stuff – you’d never actually see the good things that people do.”
“When Declan became sick, we noticed a lot of good being done for us, which really blew us away.”
Funding vital research
This year, the event raised more than $71,000 for The Kids’ Cancer Project to help fund research for childhood cancer treatments.
“We chose The Kids’ Cancer Project because they had funded the DFMO trial that Declan was part of, and we got to meet a lot of the staff,” Simon explains. “We thought that Col [Reynolds], the founder, was such an inspirational man.
“We don't think any child should have to go through what Declan did,” says Simon. “We'd love to see better treatment options and I think personalized medicine makes a lot of sense, because it shouldn’t be a one-size-fits-all approach.”
The Kane family was also inspired by the medical professionals dedicated to developing new treatments and, ultimately, a cure for childhood cancer.
“We got to meet a lot of researchers and doctors with Declan,” says Simon. “At nighttime, they're researching and then during the day, they're by the bedside. Those people just work tirelessly to help find that cure and they can't do it without money, even if it's just for better equipment to speed things up.”
In 2020, Superkids Superheroes road trip will include about 20 scooters.
“This year was our best year yet with over $71,000 raised, but I think 2020 will be even better,” says Simon. “The more money, the more research and the quicker we will find better treatment options and a cure.”