On Christmas Eve in 2019, Sydney mother of two, Erminia, received the worst news a parent could hear. Her eight-year-old son, Zane, was diagnosed with a rare and terminal paediatric brain tumour, DIPG (Diffuse Intrinsic Pontine Glioma). Sadly, their family didn’t have much time.

“DIPG children never have much time. No treatment options were available in Australia except palliative radiation,” Erminia explained.

Desperately racing against the clock, Erminia became a midnight research warrior, searching for treatment options or clinical trials overseas.

“Rare Cancers Australia helped me with that immensely and saved me a lot of time. They had that conversation with us that Zane’s doctors would not. A conversation about options and alternatives. They provided us with a lifeline.”

RCA immediately put Erminia in contact with a DIPG advocate in New York.

“She helped me navigate through treatment options and clinical trials available in the United States, and who the experts in the field were. It saved me so much time on research and provided me with contacts of doctors that were willing to discuss a plan for Zane. RCA also helped with our crowdfunding, as all this would have to be self-funded. None of this was going to cure him; we just wanted the possibility of more time with our little boy.”

Erminia and Zane’s younger brother, Saxon, did their first Kosi Challenge with some close friends last year; raising one of the highest amounts of all community fundraisers.

“March is Zane’s birthday month and we wanted to do something amazing in memory of him, while also giving back to RCA. This year Team Zane has grown, and we are so excited to be doing it again.”

“Climbing Mt Kosciusko is a feat in itself. But it’s nothing compared to what rare cancer sufferers and their families have to face. The energy on the climb is uplifting and fun. It is certainly comforting being around other people that have shared similar experiences with a rare cancer, and we love being able to help support future families on this tough road that they will sadly have to travel.”