It revealed a tumour the size of an apple on Ava’s brainstem.

Ava was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive childhood brain cancer. The diagnosis came suddenly, after only days of mild symptoms. Her parents were told that the tumour was inoperable. There was no effective treatment. There was no cure. There was no survival rate.

“I don’t understand how this worst case even exists,” said Ava’s mother, Vanessa.
“How can we live in a world where there is no treatment, no hope, and no chance when a child has this kind of brain cancer? Ava had no chance.”

Ava underwent thirty days of radiotherapy, each session requiring a general anaesthetic. The treatment was not curative. It was intended only to slow the tumour’s progression and ease its impact.

The disease continued its course.

“After about two weeks of radiation, Ava could no longer walk,” Vanessa said. “Then she began to lose her speech. It’s as if the child becomes trapped inside their own body. They can’t swallow, can’t talk, can’t eat, can’t move.”

“For us, it was terrifying and unreal. And we realised how fragile this is — it can happen to anyone. Any family can be told their child is going to die, and that nothing can be done to save them.”

Following Ava’s diagnosis, the family organised a camper van and set out on a road trip with Ava and her younger sister, Amelie. They travelled together to create moments of normality and connection — time together, while time was still available.

DIPG remains a disease with virtually no treatment options and minimal research funding. Stories like Ava’s are not rare. They are repeated, quietly and devastatingly, in families across the world.

Change begins with awareness. And awareness begins with listening.