One week before Claire’s diagnosis, a clumsy fall left her with a cut above her lip that needed to be glued. A week later, during a routine check-up to see how the wound was healing, we raised concerns with her doctor—Claire’s clumsiness was worsening, she was holding her left arm awkwardly, and she seemed increasingly disoriented.

Her doctor handed us a printed letter and instructed us to go straight to the Royal Children’s Hospital for further examination. That evening, Friday, 21st June, we arrived at RCH and were admitted overnight. The next morning, on Saturday, 22nd June 2024, our six-year-old daughter underwent her first-ever general anaesthetic and MRI.

Then came the devastating words: “Your daughter has a brain tumour. Due to the location, we cannot operate. I am so sorry.”

The tumour was DIPG—a disease we had never heard of. There is no cure. The only available options offered no guarantees, just the possibility of buying more time. Without a biopsy, Claire’s only treatment path was six weeks of radiation and a new clinical trial that had only just become available.

On 2nd July, Claire began 30 sessions of radiation, each requiring a general anaesthetic. She also started taking weekly doses of Selinexor, the trial medication.

Claire faced DIPG with extraordinary courage, enduring:

•21 nights in hospital

•3 MRIs

•30 sessions of radiation

•3 CT scans

•33 general anaesthetics

•19 blood tests

•1 nasogastric tube

Alongside countless:

•Medications

•NG tube tape changes

•Hours spent travelling to and from appointments

•Missed school days, events, and birthday parties

•And so many tears.

In October, during a family trip to the Gold Coast, Claire’s condition suddenly deteriorated, and she was admitted to hospital. On 17th October 2024, just four months after her diagnosis, Claire passed away.

Forever 7