Boy with a fatal form of brain cancer to pursue trial in USA
An eight-year-old Sydney boy diagnosed with a fatal form of brain cancer is heading to the USA to join a cutting edge trial that may save his life. But the family needs help raising the funds to get Zane West to New York.
NSW
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A Sydney mother is hoping to raise $450,000 to take her eight-year-old son overseas for a potentially lifesaving drug trial for his brain cancer.
Ermina Hatzl’s son Zane was diagnosed with the aggressive brain stem tumour diffuse intrinsic pontine glioma (DIPG) on Christmas Eve last year.
Children are given less than a year to live with DIPG as there is a lack of drug trials and therapies in Australia.
So Ms Hatzl wants to take Zane to New York to go on a trial under paediatric neurosurgeon Dr Mark Souweidane, who has pioneered a new way to deliver drugs directly into the brain stem tumour.
“What other options do we have? We have to, there is nothing proven here,” Ms Hatzl said.
“If it gives us more time with him, we are willing to give it a shot.”
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DIPG kills around 20 children a year in Australia but funding and potential trials have been delayed.
“We are in the same situation as other parents, there isn’t any good treatment options here in Australia,” Ms Hatzl said.
Dr Souweidane has been trialling a drug called Burtomad 124I-8H9 delivered directly to the tumour site. Although his method has shown shrinkage of tumours in children, most have still succumbed to DIPG. The next trial will involve delivering higher levels of the drug.
“We want to do it in the next six weeks if we can afford it,” Ms Hatzl said.
“I don’t want to waste time, we want to get over there as quickly as possible and I feel like I have found some hope.
“We have a small window of opportunity to get him onto this trial and hopefully see some result. We have two options, sit at home and watch him die or fight till the end and hopefully one day see a cure.”
Ms Hatzl said the hopelessness of the situation in Australia was made very clear to her.
“We were taken into a private room with doctors and all I heard was ‘brain tumour’,” she said.
“The way the doctor presented the news, the diagnosis was like he was saying he died on the operating table, he was gone, and it was so surreal.”
In a desperate bid to find options, Ms Hatzl has also considered a drug called ONC201, which has been shown to kill tumour cells in studies overseas, but again is not on trial in Australia.
Dr Matt Dun, the Newcastle-based cancer researcher who lost his four-year-old daughter Josephine to DIPG last December, managed to get ONC201 by flying to Germany and pleading to get the drug on compassionate basis. It was too little too late but Josephine lived a year longer than expected.
“At the moment it is up to parents to travel overseas to get treatment,” Dr Dun said.
Last month The Sunday Telegraph reported on yet another family who were preparing to sell their home to buy more ONC201 from overseas at a cost of $1800 a week.
Laylah Smith, 12, was diagnosed with DIPG in May last year and had obtained the drug from Germany. She has shown 20 per cent tumour shrinkage as a result.
Over the past two years, The Sunday Telegraph has followed the fight for treatment and hope for Josie Dun, four; Annabelle Potts, five; Annabelle Nguyen, five; Carys Bradshaw, eight; Doris Sun, four; Kye Funch, six; and Amity Rogers, six. All have passed away.
“We need more funding and we need research and we need it now, it’s devastating and I can’t understand why it has taken so long,” Ms Hatzl said.
To help Zane go to gofundme.com/f/fight-to-save-zane-west or treat.rarecancers.org.au/campaign/2093/helping-zane-west
Originally published as Boy with a fatal form of brain cancer to pursue trial in USA