Eve’s story below, was written at the beginning of 2024 prior to progression. Devastatingly Eve passed away on 28th May 2025, 4 years and 2 months after her diagnosis.

On Wednesday March 10th 2021, I took Eve to our GP because she had a limp and she couldn’t close her fingers to grasp her book. I thought she had a fracture. The GP wrote a letter and told me to take her straight to the emergency room at Sydney Children’s Hospital. He told me not to open the letter and to just give it to the doctor in the ER. Two hours later a scan was done, and several nurses came into the room to sit with Eve. We were taken into a room with a box of tissues placed in front of us, the scan was placed on the screen, and we heard the words, “I am sorry. We have found a lesion in your daughters’ brainstem. Your daughter has a diffuse intrinsic pontine glioma – DIPG”. Go home and make memories.

Thirty-nine months ago, our lives were shattered and destroyed beyond what anyone can comprehend. We were handed a death sentence for our little girl. We were told we had 12 months left with her. Go home and make memories. Eve is an only child who came to us after multiple rounds of IVF treatments. She was our miracle baby, and she is our whole world.

Eve underwent a brain biopsy at Sydney Children’s Hospital which was followed by 25 rounds of radiotherapy, the only Standard of Care practice available to children diagnosed with DIPG. Imagine, a frightened little five-year-old girl alone in a strange room bolted down to the table by a mask fitted onto her face to try and give her some months so that she can make “memories” with her devastated family. A five-year-old girl who up until this moment has not known hospitals or what it is to be so sick.

Radiotherapy resulted in severe pseudo-progression for Eve and thus she lost complete use of her left hand, and she now has difficulties walking. Every week since then, Eve completes physiotherapy and occupational therapy at Sydney Children’s Hospital to maintain the strength she has remaining and to avoid exacerbating the disabilities she has. To date, Eve has had to endure: 34 blood tests, 13 MRIs, 25 RT sessions, 1 CT scan, 3 X-rays, 6 EKGs, 3 ultrasounds, 1 brain biopsy, 2 surgeries, 4 GA’s, 16 cannulas, 230+ appointments, 28 days inpatient in hospital, 8 emergency visits, 55 absent days from school, 2500+ pills, countless covid swabs, countless ulcers, rash, side effects.

Thirty-nine months later and she’s still fighting the biggest fight of her life. Less than 10% of children diagnosed with DIPG make it to the two-year mark. At the time when Eve was diagnosed, there was only one clinical trial open in Australia. However, based on her biopsy report, we were able to access the drug Paxalisib on compassionate grounds from the pharmaceutical company and another ONC201 which we pay out of pocket $3000 per month to source from Germany. These two drugs form the PNOC022 trial which only opened in August 2022 to all other patients in Australia. The PNOC022 trial was researched by Professor Matt Dun and his team at the University of Newcastle using bereaved DIPG family’s charity donations with no government input.

Without this trial and the incredible work of the research team, Eve wouldn’t have been able to create the precious memories she did.