DIPG or Diffuse Intrinsic Pontine Glioma is an aggressive, cancerous brain tumour that develops in a part of the brainstem and is inoperable the only option available is radiation to prolong life.

Our brave girl was diagnosed on the 26th of September 2018 at the young age of 3. Tori, Aaron, and I headed to the Ronald McDonald House in Randwick to start her 30 days of radiation. Every day our little girl had to go under a general anaesthetic, which meant no food or water until she was done with her radiation. We lived in Sydney during the week and got to go home every Friday to visit with her brother Harrison and Alexander. Once radiation was done we found out that the radiation did not shrink Tori’s tumour.

At this time the only trial we were offered was ACT001. While Tori was on ACT001 she slowly lost her ability to walk and was declining in health. Aaron, Tori’s dad had flown to Germany to purchase a trial drug that was not yet in Australia ONC201. We started Tori on the ONC201 and started seeing an oncologist in Newcastle. Slowly Tori started walking again, to say the least it was a miracle. My little girl was walking, talking, cooking, and doing arts and crafts.