On the 17th February 2018, our world was shattered when our daughter Josephine, just 2 years young was diagnosed with diffuse intrinsic pontine glioma (DIPG). The most deadliest form of childhood cancer with average survival from diagnosis just 9 months and <1% of those diagnosed living 5 years.
As a cancer researcher myself at the Hunter Medical Research Institute (HMRI) in Newcastle, and my wife a local GP, we were immediately too aware of the devastating course any brain cancer, let alone one as aggressive as DIPG was going to run. And we have not been spared. To date, Josie has undergone more than 50 general anaesthetics, 30 doses of radiation therapy to her brainstem, 7 surgeries and numerous other violations to her precious little body. I knew I could not continue to limit my research to childhood leukaemia when there seemed so much to be gained in the research of DIPG from skills and techniques I was using everyday.
So I developed my own research program through HMRI particularly focused on investigating ways to predict DIPG progression (in its early stages) as well as testing new drug therapies with the aim of improving survival. To date my cancer research expertise centre on my unique ability to sequence (identify) proteins. Proteins, which are the targets for most drugs used to treat cancer. I have begun to use this expertise with the aim of establishing new treatment strategies for Josie and all children with DIPG.
We have created this GoFundMe page with two things in mind. Firstly any intervention that is likely to change the outlook for our Josephine is likely to be an international trial, with a large price tag, not rebatable by Medicare. Like any parent, if such therapy becomes available in time for Josie, we would give anything to get it for our girl. Secondly research is expensive. We would like to donate any funds not required to improve Josie’s quality of life or life expectancy into Matt’s research into this monster of a disease at HMRI.
Thank you for your support. Matt, Phoebe, Josephine and George