Amity Rogers died at age six from brain cancer. Picture: Megan Cassidy
Amity Rogers died at age six from brain cancer. Picture: Megan Cassidy

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.

The Rogers family at the charity walk raising funds for brain cancer research. Pictured from left: Jackson Rogers holding their youngest daughter Georgia, Atticus, mum Mary Ellen, and Rufus.
The Rogers family at the charity walk raising funds for brain cancer research. Pictured from left: Jackson Rogers holding their youngest daughter Georgia, Atticus, mum Mary Ellen, and Rufus.

"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.

Some children, including three Australian children being treated at the Monterrey clinic, are surviving beyond their prognosis.

The Rogers family portrait before Amity’s death. Picture: Megan Cassidy
The Rogers family portrait before Amity’s death. Picture: Megan Cassidy

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."

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.

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.



Yeppoon student's bright idea to support local businesses

premium_icon Yeppoon student's bright idea to support local businesses

ST BRENDAN'S college student is developing his very own app.

Lucky escape for passengers in CQ car and truck smash

premium_icon Lucky escape for passengers in CQ car and truck smash

PHOTOS: Truck was carrying an explosive material used in mine blasts

REVEALED: Former test player announced as new Capras coach

premium_icon REVEALED: Former test player announced as new Capras coach

INTERNATIONAL player brings wealth of knowledge to CQ side

Local Partners