One year into his life, Harris Richardson was facing death.
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Now, at three years old, he will be known as a lifesaver.
To see Harris now, you would not believe the torment his little body has been through.
He's vibrant, inquisitive, joyous, chatty, bold and energetic - a normal toddler who has been through an extraordinary battle.
He'll also come to be known to families of children with neuroblastoma, a form of cancer that typically affects infants and children under five, as a hero.
His story and intense lobbying from cancer-impacted families, led by his father, Tyler Richardson, resulted in access to the drug DFMO in Australia and ultimately its listing on the Pharmaceutical Benefits Scheme.
Previously, families had to travel to the United States to access it.
Mr Richardson, known as the frontman for Tasmanian band Luca Brasi, said oncologists had told him that they had wanted the drug to be approved for years.
"Eventually it would be approved, but eventually wasn't soon enough for us," he said.
"Essentially, it's to prevent the cancer from coming back and prevent relapse.
"If he does relapse, it (DFMO) increases his chances of survival by a huge margin.
"Relapse for neuroblastoma has a five per cent survival rate, so it's as aggressive as it gets.
"The push to get DFMO in Australia is now part of his legacy."
Harry's journey
Mr Richardson and his wife, Alix, noticed that Harris was constantly sick and in pain within 10 months of his birth.
"He was at the point that we couldn't actually put him down, because he was just in agony," Mr Richardson said.
They searched desperately for answers and a solution, but were unable to get anywhere after numerous doctor appointments.
It was one general practitioner who decided Harris needed urgent medical attention at the Royal Hobart Hospital's emergency department.
It was there that they got the answer they never wanted to know: their firstborn child had cancer.
Lives and jobs were put on hold, and the small family relocated to Melbourne, where they could get the treatment for Harris that was needed.
They lived there for almost two years and were assisted generously by a GoFundMe campaign that raised about $150,000 for the family to live on while they were away from home.
"Chemo started to try to shrink the tumour, which was the size of a grapefruit, pushing on his organs," Mr Richardson said.
"It was so big and so tangled up in his organs, so there was concern about cutting it out.
"His stem cells were all wiped out, and he was at death's door.
"He was then pumped full of new stem cells and rebuilt.
"Eventually, he just became a totally different kid."
Mr Richardson said he formed close bonds with families in similar situations during their time at the Royal Children's Hospital in Melbourne.
He cried with them and held their hands when they had to deal with the worst news imaginable.
"There were probably five or six (Tasmanian) families over the time," Mr Richardson said.
"Some with kids didn't make it, some are still there.
"When kids died, it was just heartbreaking.
"Kids shouldn't get sick, and kids shouldn't die like that."
Harry's future
Now back home in Tasmania, Harry's battle with cancer seems much more behind him.
There are still scans and trips to the hospital that need to be done, but these things are more observational if anything.
The only drug he needs to take in recovery is DFMO, twice daily for two years.
Mr Richardson said that due to the success in having that drug approved for use in Australia, his sights were now set on approval for CAR T-cell therapy, and he had joined forces with Neuroblastoma Australia to make it accessible in the country.
He said it was the little things that brought him joy with Harry these days; something simple like feeding him food normally rather than through a nasogastric tube or adventure play around the house.
Mr Richardson said while there were fears Harry could be set back developmentally, this does not appear to have happened.
There were also concerns about the lasting impacts of trauma.
"Some kids get PTSD from adults from their treatment, because doctors come and do all this painful stuff, but he loves going to the hospital," he said.
"Hopefully for him, it will just be a distant dream, and he will never know.
"Hopefully, it happened when he was too young for him to have any memories about it."
Mr Richardson is working to set up a foundation in his son's name to raise money for and awareness about neuroblastoma, and he already has sponsors lined up to help out.
Later this year, he and 34 others will take part in Point to Pinnacle, recognised as the world's toughest half-marathon, in Hobart under the banner Team Hazza.
A much smaller team took part in the race last year and raised $15,000 for neuroblastoma-related causes.
To support Team Hazza in the race in November, visit: https://pointtopinnacle2025.grassrootz.com/neuroblastoma
