Zane is 8 years young and on Christmas Eve 2019, our world was shattered after learning that our loving, vibrant and energetic boy has a rare and aggressive brain tumour.
Like all boys Zane's age he loves playing any kind of sport, surfing and soccer to name a few, but most of all pranks on his little brother Saxon, only now the little prankster finds it hard to do the most simple of things, as simple as walking a straight line.
It breaks our hearts to see our little boy struggle as he does, along with the confusion from Saxon not quite knowing why or where his brother has gone.
As any parent, we will go to the ends of the earth to try any option available to us, which brings us here...
These funds will not only help us get to America as a family for treatment, (which we've been told could be up to $400,000) but with on going campaigning, we hope to help other children going through the same thing.
"Let me continue on Zanes story".
In the week leading to Christmas we noticed Zane was losing his balance and not able to do activities he would normally do with ease. We wondered if he was tired after a big year at school, but his symptoms began to rapidly escalate so we went straight to the doctor. After assessing zane, we rushed to the hospital where they preformed
a number of tests and subsequently delivered the news that no parent should ever have to hear... Zane had Diffuse Intrinsic Pontine Glioma (DIPG) an extremely rare and aggressive childhood Cancer. Which kills about 20 Australian children a year, and has an average survival of just 9 months from diagnosis.
DIPG almost exclusively attacks our youngest (children under 12) and most vulnerable, who should have their whole lives ahead of them and there is currently no cure. Shockingly, despite all the advances in Cancer treatments, DIPG treatment is the same as it was 40 years ago. Due to its location in the brain stem surgery is not an option and there is little other than radiation, which is not overly successful.
We can only achieve this with your help & kind donations, no matter how big or small. We are aiming for $400,000, which will help with Zane’s treatment & associated costs, travel & accomodation.
Thankfully, over the last 18 months there have been promising advances in overseas clinical trials. There are two lines of treatment for which there is reasonable data indicating potential effectiveness. One is using a groundbreaking technique called, Convection-Enhanced Delivery (CED) of a therapeutic agent, Omburtomad, directly to the tumour. We have decided on a trial at Memorial Sloan Kettering Cancer Centre in New York with Dr Mark Souweidane. Zane will need to be there for 6-7 weeks. Now that Zane has finished his radiation therapy we have a tight window of opportunity during the “honeymooning period” before progression starts. Time is limited and we don't have a day to waste. Eligibility for this trial depends on his post radiation MRI scan. If the tumour has not reduced in size he won't be eligible.
Our second option will be again to go overseas, to gain access to another clinical trial using ONC201. ONC201 trials are being carried out in a number of units including Cleveland Clinic.. ONC2O1 has been shown to induce tumour cells to selectively kill themselves, leading to a reduction in tumour size and prevention of tumour growth. Unfortunately, ONC201 and other similar trials are not yet available in Australia and will be some time away.. but with DIPG, time is limited and we don't have a day to waste. This tumour is savage... words can not describe how heart breaking it is to watch him decline in just a few weeks... From surfing and playing basketball with his younger brother to stumbling, slurring his speech and needing regular sleep. We are determined to fight and give Zane every possible chance.
We have created this gofundme page with two things in mind- firstly, to give Zane his best chance of survival and quality of life by accessing these new drugs through overseas clinical trials or on a compassionate basis. This will be costly, but it is our hope. Secondly, we would like to donate any funds not required to improve Zane's prognosis and quality of life, to much needed research that will help other children and their families combat this horrible disease.
We have also created a patient treatment fund with Rare Cancers Australia Foundation for those that would like a tax deductible donation. See link below:
We are forever grateful for any contribution you can make.
Thank you for your support.
Erminia & Steve xx
- Richard Thai
- Osc H
- Michael Keane
Fundraising team (2)
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more