Neuroblastoma is an aggressive, often deadly cancer impacting roughly 50 Australian children each year. The treatment is brutal and even then, half of patients will relapse.
There is a ground-breaking new drug that could stop it from returning but it’s currently only available overseas, at a huge cost. Local families are now pleading with the Government to make it available here.
Nine-year-old Zai Abdollahi was diagnosed with high-risk, stage four Neuroblastomas last year and since then, has undergone what is described as one of the most gruelling cancer treatment protocols a child can undertake.
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He’s endured multiple rounds of high-dose chemotherapy, radiation, two eight-hour surgeries, a bone marrow transplant and six months of immunotherapy.
But despite that, it mightn’t be enough to save him.
“Unfortunately, this cancer has a 50 per cent relapse rate and if you relapse, your survival rate can plummet down to 5 per cent,” his mum, Kalee Abdollahi explains.
There is some hope in the form of a drug called DFMO. Approved by the FDA in December, it’s been shown in trials to significantly reduce the risk of relapse in high-risk patients, in some instances by 50 per cent.
“It’s been on the American protocol now for a while but it just hasn’t been brought here to Australia,” says Kalee.
An application was made by Neuroblastoma Australia and the Australian and New Zealand Children’s Haematology and Oncology Group (ANZCHOG) in April, for urgent federal funding to ensure neuroblastoma patients can access DFMO via the TGA Special Access Scheme, until accelerated approval can be granted.
“There is an accelerated process happening right now for DFMO but it still means it will take a year to maybe 18 months to get approved and that is simply not quick enough,” says Lucy Jones, CEO of Neuroblastoma Australia.
“Children with neuroblastoma, high risk neuroblastoma, do not have time. They do not have the luxury of time.”
“The federal government, Health Minister Mark Butler, could actually make that access available today if he chose to,” she says.
In a statement, Minister Butler told 7NEWS: “We are doing everything we can, as quickly as we can, to work with the supplier of DFMO and provide some relief to children and families battling neuroblastoma.”
It’s understood a PBS listing of DFMO will also be lodged, once approved, with the drug costing on average between $500,000 to $700,000 per patient.
The Abdollahi family is currently trying to fundraise $200,000 to ensure Zai can access DFMO in the United States in the coming weeks.
“The community has been rallying behind us and doing fundraising events. We also have our ‘Fight For Zai’ fundraising gala coming up,” says Kalee.
“(Minister Butler) needs to bring the drug here so none of us need to get on a plane and travel with our immune-compromised children and take them overseas.”
“These children have endured enough, they’ve endured 18 months of treatment. The families have endured enough.”
For others, it’s already too late.
Five-year-old Jack Schofield, has undergone a similar treatment plan to Zai and also planned to race to America to access DFMO once he completed immunotherapy.
In the cruelest of twists, Jack relapsed weeks ago.
“When you hear that your child has relapsed, you know that their chances are significantly reduced and you know that the options for treatment, particularly here in Australia are even further reduced,” reveals Jack’s mum, Jaimee Thompson.
“For me, I actually found it harder than when we originally found out.”
With DFMO no longer an option, the Schofield family is now awaiting confirmation of a place in an Italian clinical trial, using ground-breaking CAR T-Cell therapy.
“They now have a success rate of 82 per cent,” Ms Thompson says.
“Unfortunately in Australia some of the standard-of-care treatments that are available for kids.. And even some of the drugs in America, are not available here… So we have to go overseas.”
The Schofield family is also desperately trying to fundraise $700,000 to ensure their son can access the CAR T-Cell treatment in Rome.
Kalee says the Australian Government urgently needs to prioritise funding to ensure immediate access to DFMO for neuroblastoma patients and ensure more adequate funding is available to children who have relapsed.
“My child’s life is on the line,” she says.
More details on how you can support Zai and Jack’s treatment:
Zai’s Go Fund Me Fundraising Page
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