A face that must haunt our pollies
The symbol of brain cancer fight
THIS beautiful little girl died in January because our governments have ignored childhood brain cancer.
Amity Rogers was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in August 2016 and given less than 12 months to live.
There is no cure for DIPG, a tumour that grows in the brain stem — a situation that has not improved in 50 years.
Amity’s parents are hoping their daughter’s story will help change this.
“To me it’s stunning. It’s funding. I want everyone to think, yes, this is unacceptable and let’s do something about it,” Amity’s dad Jackson said.
Last year the federal government finally granted $50 million for brain cancer research, which was matched by Cure Brain Cancer Foundation and mining magnate Andrew Forrest.
But the money does not become available until January 2019, meaning a promising upcoming trial will be funded by charity.
To help that, this week, Amity’s brothers Rufus, 4, and Atticus, 9, took part in a walk organised by Amity’s school, Truscott Street Public, to raise funds for DIPG charity The Cure Starts Now.
“The brains are there, the clever ambitious doctor are there but they don’t have the money to fund this work. It if could only get to that point as it did with leukaemia,” mother Mary Ellen said.
Like all parents given this horror diagnosis, the Rogers went on a worldwide search for answers.
The North Ryde family did travel to Mexico, to the clinic we reported on last month, where DIPG children are being given an experimental cocktail of drugs and immunotherapy.
Amity’s parents are completely supportive of other parents whose children are currently under treatment in Mexico by doctors Alberto Garcia and Alberto Siller, but they made the difficult decision not to go ahead due to the lack of transparency.
“I was not going to sign my five-year-old daughter over with doubts. It was opaque and it should be very clear,” Mr Rogers said.
Ms Rogers added: “We would never want to be seen to criticise parents who chose it, we know that desire to make that choice because we were so close to it and we will forever live with that conflict of did we do the right thing? Maybe Amity would have responded well and got the extra time, we have to live with that, we just wish it was something that parents could say, right I know everything and I am making the best choice I can make, but it is not like that at the moment.”
The Cure Brain Cancer Foundation has approached the Monterrey clinic with the hope of the doctors allowing a research expert to observe their techniques.
A PR agent hired by the clinic has confirmed the request has been received and they are “assessing it”.
Cure Brain Cancer Foundation said they had established communications
with the clinic. THE FAMILY IS HOPING TO RAISE $ 25,000 FOR RESEARCH. GO TO GIVE. EVERY DAYHERO. COM/ AU/AMITY ROGERS TO DONATE.
Amity Rogers died at age 6 from brain cancer. Picture: Megan Cassidy
The Rogers family.