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Sophie Grills lives at Bulahdelah looks like every other four-year-old girl, with her infectious smile and short dark hair.

But Sophie’s smile hides a battle with a rare form of cancer known as Pineoblastoma, discovered when she was just two-years old.

Only seven people worldwide have this cancer, and Sophie is the only person in Australia.

The Bulahdelah toddler has endured numerous surgeries to remove a tumour, blood transfusions and ten months of chemotherapy.

With no known treatments, Sophie’s parents Robert and Rebecca were told to expect the worst.

“We thought we were going to lose her, she didn’t even know we were there,” Rebecca said.

“It was very hard telling Sophie’s four siblings their sister might not survive.”

Sophie and her family have since returned home, but extensive double doses of chemo have taken a destructive toll. Sophie’s muscles are incredibly weak, and she has to learn to walk and talk again.

Her ongoing treatment requires regular journeys to Sydney and three weekly trips to Taree.

Sophie’s treatment is not listed on the Pharmaceutical Benefits Scheme (PBS) so the family must pay for treatments themselves.

A report from Rare Cancers Australia (RCA) released in March, reveals rare cancers kill one child every four days making it the number one killer of Australian children.

CEO Richard Vines, said the impact of these neglected cancers on all Australians is simply devastating.

“Every day young Australians are randomly selected to fight a life threatening battle against a relentless foe,” Mr Vines said.

“While the impact of rare and less common cancers on our young is tragic, it gets worse as the population ages.”

Rare cancers strike down one young Gen Y Australian (aged 20-39) and take the lives of nearly 10 Gen X Australians (aged 40-59) every day.

With the lack of funding into these cancers, families like Sophie’s struggle to afford treatments.

With only four new medicines approved for solid rare cancers compared with more than 55 for common cancers, RCA are calling on the government to increase funding into treatment and research.

For Rebecca and Robert, their hope for the future is to give Sophie the best care they possibly can.

A fundraising campaign has been created, with all donations going towards the cost of Sophie’s treatment.

To read more about Sophie’s courageous story or make a donation and help improve the quality of her life, visit the Sick or Treat website at http://www.sickortreat.org.au/campaign/2026/helping-sophie

By Daniel SAHYOUN