“YOUR child is going to die. She has Diffuse Intrinsic Pontine Glioma (DIPG) and only has six to 12 months to live”
It is the news, the sentence, no parent wants to even imagine, let alone hear.
But the prognosis was a brutal reality for Danielle and Darryl Squires when they lost their daughter Monique to this rare form of brain cancer.
And Diffuse Intrinsic Pontine Glioma is as frightening as it sounds.
It is an incredibly aggressive and incredibly rare paediatric tumour that affects only about 300 children worldwide each year.
It strikes at the heart of childhood, affecting the pons portion of the brainstem, which connects the upper and lower parts of the brain, rendering nervous system function impossible.
The survival rate is zero.
But one year on from five-year-old Monique’s brave fight, the tide is slowly turning on this insidiously efficient killer.
Breakthroughs in research at the Children’s Cancer Institute have given hope there could one day be a chance of children surviving DIPG. A day when the diagnosis and prognosis the Squires family were given is just a string of words and not a death sentence.
Using tissue donated from children who have died from DIPG, researchers have been able to regrow cancer cells in a lab and subjected them to thousands of different drugs.
Promising results mean adult drug trials could be only a couple of years away.
While nothing will ever fill the void left by Monique’s death, the Squires family hope a cure can one day be found to avoid families having to go through their hell.
Last year ‘Team Moni’ began raising money as part of the 15km Run for the Kids fun run.
The team raised $10,600 for cancer research in its first crack at the event and then $13,500 earlier this year.
“Results like this are why we, and so many other people, put in the effort to raise funds and awareness for this disease,” Danielle said.
“It’s still early days but these are exciting results that could mean parents get a bit more time with their children.
“We’re not getting ahead of ourselves but it’s nice to have a little bit of hope.”
Darryl said many people weren’t aware of how many lives brain cancer impacts and research like this was a step in the right direction.
“Fifty years ago there was no research and no funding for this disease, it didn’t even have a name. We are slowly making progress,” he said.
“People are taking notice and all the efforts are making a difference. I hope one day parents don’t have to go through what we did, what Monique did.
“At the moment it’s about buying time because every moment we got with Monique was precious.”
For more information about the breakthrough research visit ccia.org.au/blog/new-hope-childrens-brain-cancer.
And to donate, visit give.everydayhero.com/au/team-moni