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Matty's Hope
Hope is being able to see that there is light despite all of the darkness
- Desmond Tutu
The Children’s Cancer Institute is undertaking Australia’s first research project “Matty’s Hope” into
Diffuse Hemispheric Glioma, H3 G34-mutant (G34-DHG), a rare and aggressive type of brain cancer.
There is very little known about G34-DHG, its causes and how it can be treated.
Matty’s Hope will focus on finding new ways to treat G34-DHG and will have two broad aims:
- Use our Drug Discovery Centre to test thousands of drug compounds against G34-DHG, with the most promising of these taken on to further testing in our living models of brain cancer
- Identifying new ‘therapeutic targets’ – vulnerabilities through specialised genetic engineering tools in the laboratory to find out what drives the growth of G34-DHG at a molecular/genetic level.
The Institute's effort have helped improve the survival rate of Leukemia patients and have been successful in pioneering clinical trials for DIPG patients.
How you can help
An initial target of $150k was set to enable a dedicated research project into G34-DHG at Children’s Cancer Institute. Thanks to the amazing community support, this initial goal has been surpassed. Your continued support will allow the Brain Tumour Group to dedicate more time and resource to the two aims of Matty’s Hope and give this research project longevity.
Learn more about this research project from Dr Maria Tsoli and Dr Kenny Ip through the video on the right. Partner with us to give patients and their families battling this deadly brain cancer Hope. With your help, we can turn the tide on brain cancer.
It’s not if, It’s when.
Donate Now
Matt's Story
Matt had a firecracker spirit. He approached everything he did with boundless energy, joy and with such enthusiasm that it was contagious.
But most of all, Matt had a gift for connecting with people.
His gentle and kind-hearted nature, his willingness “to just have a chat”, his infectious smile would ensure that he would forge lasting friendships with all those he met.
Matt was a healthy, active 19 year old. He seldom got sick. So when Matt experienced migraines in July 2021 his doctor recommended that he get a MRI. The MRI was clean. There was no indication on the scan that there was anything to be concerned about.
More signs that something was wrong would follow. In August 2021 Matt started to have blurred and double vision. Having only recently had a MRI, Matt was referred to an opthalmologist.
However, in November 2021, as Matt was playing his favourite sport of hockey, friends noticed some slight facial palsy (paralysis) and issues with coordination. Matt saw his doctor again and was referred to a neurologist, who requested that Matt go for another MRI.
This time, the MRI showed some faint sand like specks. Matt was immediately admitted to hospital where despite undergoing further test – including CAT scans, PET scans, numerous blood tests, there were still no definitive diagnosis.
The team of doctors debated on the option of a biopsy. It wasn’t clear precisely where the sample should be taken from, or whether a biopsy would provide further insight. But Matt was willing to go through with the risk of a biopsy in the hope of finding some answers.
On 1 December 2021, a biopsy was performed.
On 8 December 2021 we were given the devastating news. Matt had brain cancer - Diffuse Hemispheric Glioma, H3 G34-mutant (WHO Grade 4).
Matt knew that he had a battle on his hands. But Matt faced his cancer prognosis and treatment with the same positivity, resilience, determination and drive that he had exhibited throughout his life.
He bravely endured everything that the doctors threw at him including the kitchen sink. He celebrated his 20th birthday on 24 December 2021 whilst undergoing radiation therapy and chemotherapy.
We saw firsthand how debilitating brain cancer can be. Matt lost his ability to communicate, his ability to eat and appreciate food, his mobility and his independence.
Despite all this, Matt never ever gave up.
Matt passed away peacefully at home on 29 July 2022 surrounded by family, 5 months shy of celebrating his 21st birthday.
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During Matt’s brain cancer journey, we searched the internet, we consulted oncologist friends only to discover that brain cancer is a mine field and still very much a mystery. To date, we still don’t know very much about the brain cancer that Matt had. We only know that it is an extremely rare form of brain cancer, is highly aggressive and found predominately in children.
We also learnt that there is currently very little in the way of treatment options available for Matt’s type of brain cancer apart from radiation and only one type of chemotherapy drug. There are no clinical trials available.
We are still trying to come to terms with losing Matt.
To witness your child having to endure pain and suffering, watch him deteriorate and not be able to do anything, unable to shield and protect him is gut wrenching.
But we are trying to find the strength so that we can honour Matt’s memory. We have collaborated with Children's Cancer Institute to undertake Australia’s first research project on G34-DHG, and have been brainstorming other fundraising activities for brain cancer research and ways in which to make a difference.
We hope that through much needed funding and research, one day there will be a cure for brain cancer.
Matthew Liam Lam (our Mad Little Lamb) your ethos inspires everything we do. Always in our hearts, forever in our thoughts.
- Tomy, Katie and Alyssa
The Brain Tumour team
The brain tumour group at Children's Cancer Institute, led by Professor David Ziegler, investigate new treatment strategies for malignant and incurable childhood brain tumours.
David will be leading Matty's Hope, along with Dr Maria Tsoli and Dr Kenny Ip. Your support will fund this dedicated research to the previously under researched Diffuse Hemispheric Glioma, H3 G34-mutant.
Read more about brain cancer research at the Institute