Maddie was diagnosed with the deadliest childhood brain cancer known as DIPG/DMG* in December last year at just six years old.
Charlie operated to remove as much of Maddie’s brain tumour as he safely could.
With her family’s consent, Charlie Teo Foundation Brain Tumour Bank provided a sample of her tumour to childhood brain cancer researcher Associate Professor Matt Dun so his team could work to try and uncover personalised treatment options.
Parents, Alan and Trish’s journey all started one summer afternoon in December 2020 when their beautiful 6-year-old daughter, Maddie, was rushed to hospital with a severe migraine. Following a series of tests, Maddie’s parents were devastated to learn that their little girl had a brain tumour.
After receiving the results from a biopsy of Maddie’s tumour, her parents were told that her tumour was a Diffuse Intrinsic Pontine Glioma. They were also told that the tumour was inoperable and that Maddie had less than two years to live.
The family soon learnt of the work of Professor Charlie Teo. Maddie was taken to meet Charlie who explained that he would operate and remove as much of the tumour as he safely could. Maddie was scheduled in for her operation with Charlie straight away.
On the 15th of December 2020, Maddie underwent brain surgery. Maddie has had to endure so much. Going for multiple MRI scans, wearing the radiation mask and having to lie still during her treatment is scary and very difficult for someone so young. She’s had to go through weeks of radiation therapy and suffer the side effects that go along with it.
Children with DIPG have an average survival time of just 9 months from diagnosis.
Maddie’s dad, Alan says: ”This simply means DIPG research and treatment has been under funded and there hasn’t been enough attention drawn to this area. And if the standard conventional recommended treatment is radiation therapy and nothing else – they simply haven’t thought outside the square or have the guts to try something new”.
Maddie had the privilege of visiting Charlie Teo Foundation funded researcher Associate Professor Matt Dun at the University of Newcastle, Hunter Medical Research Institute.
Matt and his amazing team have managed to grow Maddie’s cancer cells in the lab from the sample provided by the Charlie Teo Foundation Brain Tumour Bank. They can now use the cells to test all sorts of drug combinations to see what may have an effect against Maddie’s tumour.
With no other treatment options currently available, except palliative radiotherapy, Matt and his team advocate for the timely and innovative development of DIPG therapies, and improvement to current standard-of-care.
We are so proud at the Charlie Teo Foundation to be openly sharing samples with researchers to try and help children like Maddie and give hope to families.
We hope these collaborations will find the answers needed to develop better treatments for brain cancer.
Maddie was inspired by the visit and learnt so much. You can learn more about Associate Professor Matt Dun and his research funded by the Charlie Teo Foundation here.
Alan, Maddie’s Dad, reflects on everything that’s happened over the last few months.
“When we first started this journey, there were so many unknowns, unanswered questions, and the uncertainty caused a lot of anxiety and fear.
We have come a long way after 5 months!
We have made so much progress – access to the best doctors, the best researchers and access to the best advice, ground-breaking studies, and positioned ourselves to receive the best treatment and care! All right here in Australia!
We are so grateful and fortunate to meet all the right people, receiving so much love, thoughts, prayers and support everywhere we go.”
*In 2016 the World Health Organisation reclassified Diffuse Intrinsic Pontine Glioma (DIPG) [Ellison et al. Acta Neuropathol 2016 DOI 10.1007/s00401-016-1545-1]. According to the new classification, it is now referred to as a Diffuse Midline Glioma (DMG), which is the name you will see referenced in Charlie Teo Foundation’s research communications.