SA family’s desperate bid to save three‑year‑old daughter from rare brain cancer
Doctors told Elsie Avery’s parents the little girl ‘won’t live long enough’ for conventional treatment.
A South Australian family is desperately to raise funds for overseas treatment to save the life of their youngest daughter.
Three-year-old Elsie Avery has been diagnosed with a rare and aggressive brain cancer and her only hope of survival is a personalised treatment only available overseas.
Elsie , from Mount Barker, was diagnosed on January 10 with diffuse intrinsic pontine glioma (DIPG) —, a tumour that forms on the brain stem and is considered inoperable and incurable.
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By continuing you agree to our Terms and Privacy Policy.About 25 Australian children are diagnosed each year and standard treatment options are extremely limited.
Elsie’s parents, Abbey and Dane Avery, say they first noticed something was wrong just before Christmas.
After two hospital visits, doctors recommended an MRI — and within an hour, Elsie’s tumour was found.
“They just deliver the news to you that there’s a 4cm tumour in the middle of Elsie’s brain stem,” Abbey told 7NEWS.
Most children with DIPG are given nine to 12 months to live. Surgery is not an option, and radiation remains the only standard treatment.
“We met with the neurosurgeon on the Sunday,” Abbey said.
“My main question to him was what will the side effects of the radiation be for Elsie?
“I just remember his comment so vividly — it was, ‘she won’t live long enough to experience those side effects’.”
A clinical trial opening in Adelaide offered a glimmer of hope, but the family says Elsie missed the eligibility cut‑off by weeks.
According to a GoFundMe launched by friends, the family is now attempting to privately fund a personalised mRNA vaccine designed to target Elsie’s tumour using DNA taken from the tumour.
The page states the treatment is produced by a single manufacturer in Canada and costs $400,000.
“We were desperate to try it,” Dane said.
“That’s when you’re met with the figure — you can, but it’s $400,000.”
Organisers say the funds would cover manufacturing, medical preparation, administration and treatment‑related care, with Elsie’s results expected to contribute to broader research into DIPG.
The family says they are overwhelmed by community support but remain a long way from securing the medication.
Originally published on 7NEWS
