Billie Tuckerman’s daughter Evelyn received lifesaving proton therapy in the US now she is urging action on SA’s stalled Bragg Centre facility
An Adelaide mum is fighting for proton therapy to be a reality in Australia “because I don’t want anyone to go through what I’ve been through”.
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A mum whose little girl is only alive following lifesaving treatment overseas is pleading for a solution to get the stalled proton therapy facility up and running in South Australia.
Billie Tuckerman’s call is backed by big-hearted parents around the nation, who have also had a precious child given a similar, devastating diagnosis requiring specialist therapy tens of thousands of kilometres from home.
The Australian Bragg Centre, eagerly anticipated as the first proton therapy in the southern hemisphere, was due to be operational at the South Australian Health and Medical Research Institute (SAHMRI).
But a specifically designed, fortified, several storey-high concrete bunker built for it remains vacant, after the intended supplier of the hi-tech equipment used for the specialised proton radiation treatment’s contract was “terminated” about six months ago.
Billie Tuckerman’s daughter Evelyn received lifesaving proton therapy in the US after being diagnosed with Ewing Sarcoma, an aggressive form of cancer, at seven months.
“Quite literally, I’m advocating because I don’t want anyone to go through what I’ve been through … my husband could not come with me and I had to leave my 10-year-old son behind,” she said.
“We didn’t know at the time, because of the way Evelyn’s cancer was, whether or not she would be coming home with me alive or in a box … the treatment itself is so gruelling on their poor little bodies.
“To uproot yourself for two months while not knowing what the outcome is going to be and being away from your support network, it’s just horrible … words do not explain,” said Ms Tuckerman, from Adelaide.
While Evelyn, who turns four next month, was treated in Florida some children are required to travel to cities in Germany or the Czech Republic where the language barrier heightens the stress.
And while the Tuckerman family was able to access funding to cover the $500,000 medical cost of Evelyn’s treatment, not all families are as fortunate.
Many might not meet the criteria, due to the nature of their child’s illness, leaving it to families to fund it themselves or fundraise.
Ms Tuckerman, advocating for the technology to be brought to SA as a member of the Bragg Proton Centre consumer advisory group, said it was frustrating that calls by the group – including to Federal Health Minister Mark Butler – to find a fix had fallen on deaf ears.
“We’ve literally ‘got crickets’ … the delay in making proton therapy available in Australia continues to force families into impossible situations; (this) is not just a state project; it is a national lifeline,” she said.
It’s a sentiment Perth-based mum Sindhu Paul can relate to only too well, saying travelling to Adelaide rather than the US when her youngest son, then three, was diagnosed with a rare brain tumour after experiencing “unsteadiness and vomiting” would have been a godsend.
Instead, she had to leave her then five-year-old twins with her parents in India so she and husband, Heljo John, who works in IT in the health sector, could be by their little boy’s hospital bed.
“It is really hard to leave your other kids … the decision to leave (the twins) while we accompanied Daniel to the US for treatment was one of the hardest, we have ever made; it was so hard, that is the only thing I can tell you – nothing could have prepared me for the emotional pain,” she said, her voice welling with emotion eight years on.
She said had Adelaide been an option, her husband could have stayed at home with their older children, travelling between the two cities when he could.
Adelaide dad of three Alex Ouwens is among those endorsing the treatment in Australia. In 2021 his eldest son Van, then six, was diagnosed with cancer and faced the prospect of having his foot amputated.
On medical advice, the sports-loving little boy travelled to the Mayo Clinic in the US for proton therapy treatment, his family – mum Paula, big sister Maya and little brother Finn – uprooting their lives in Adelaide for several months to be with him.
“It was incredibly tough … every day away from home felt heavy; you are already facing the unimaginable – your child battling a life-threatening illness – but then you’re thrown into an environment that’s foreign, isolating and expensive,” the real estate identity said. Unable to access the medical treatment overseas program (MTOY), the family had to self-fund the therapy, which along with travel costs and accommodation is estimated to have cost between $250,000 and $300,000.
“It’s a staggering amount … when you’re fighting for your child’s life, the last thing you should be worrying about is whether you can afford the fight; as a dad, it’s gut-wrenching to think that some parents could be forced to make decisions based on money rather than what’s best medically for their child,” Mr Ouwens said.
“We want every child who needs it to have the chance to fight and survive with the best tools available, right here at home.”
In a statement to the Advertiser, Federal Health Minister Mark Butler said a proton therapy unit was “a really important part of the suite of cancer treatment options” in Australia.
“I want to see proton therapy available in Australia as quickly as possible and I’m working with the South Australia Government to try and make sure that happens,” he said.
The type of radiotherapy uses proton particles to destroy cancer cells with minimal damage to surrounding healthy tissue and organs.
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Originally published as Billie Tuckerman’s daughter Evelyn received lifesaving proton therapy in the US now she is urging action on SA’s stalled Bragg Centre facility
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