A face that must haunt our pol­lies

The sym­bol of brain cancer fight

The Sunday Telegraph (Sydney) - - NEWS - HEALTH RE­PORTER

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.

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