Face of our brain cancer fight failure
THIS beautiful little girl died in January, aged just six, 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, is inoperable and 100 per cent fatal - a situation that has not changed in 50 years.
Amity's parents are hoping their daughter's story will help change this unacceptable situation.
"I still can't believe it. If it was 20 kids being eaten by sharks, governments would be falling, voted out of office," Amity's dad Jackson Rogers said.
"To me it's stunning. It's funding. It's silent, it's kind of ugly, and it doesn't get the attention. It's just unacceptable. I want everyone to think, yes, this is unacceptable and let's do something about it."
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 for DIPG children will be funded by charity.
Last Wednesday, 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 specific 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 Rogers said.
Amity's tumour has also been donated to the Children's Cancer Institute in the hope a growing data base will help find a cure.
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 Mexican by Doctors Alberto Garcia and Alberto Siller, but they made the difficult decision not to go ahead due to the lack of transparency.
"In absolute desperation we went to Mexico, but I didn't feel convinced enough and they would not tell me the names of the drugs. 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.
Mrs 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."
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.
In three months, Australian children diagnosed with DIPG will be able to take part in a European-led Biomede trial funded by charity.
The family is hoping to raise $25,000 for research. Go to give.everydayhero.com/au/amityrogers to donate.