Doctor funds own world-first research in bid to save daughter from deadly brain cancer
CANCER researcher Dr Matt Dun is in a desperate race to save his three-year-old daughter Josephine from the most devastating form of paediatric brain cancer — but he needs some help.
NSW
Don't miss out on the headlines from NSW. Followed categories will be added to My News.
CANCER researcher Matt Dun is desperate to find a cure for the deadliest of all childhood brain cancers for the most heartbreaking of reasons.
His own three-year-old daughter Josephine has been diagnosed with diffuse intrinsic pontine glioma (DIPG), a highly aggressive tumour found in the brain stem, which kills about 20 children across the country every year.
For a man who has dedicated his life to helping cure cancer, the diagnosis of his beautiful daughter is the cruellest irony.
“It’s like a firefighter watching his house burn down without a hose,” the 40-year-old biomedical scientist from The University of Newcastle and Hunter Medical Research Institute said.
Josephine’s diagnosis came out of the blue. One day in February this year, she suddenly and inexplicably could no longer walk properly.
Dr Dun and his GP wife Phoebe — also parents to one-year-old George — took Josephine to hospital where an MRI confirmed their worst fears. She had DIPG; a cancer that is inoperable, aggressive and always fatal.
“Hard to fathom particularly as a cancer scientist a kid’s cancer with a survival rate of just 10 months,” Dr Dun tweeted soon after.
“As a dad and husband, our world is in ruins … I implore my colleagues to continue the fight despite inadequate funding. This battle can be won, but not in time for our girl.”
3 weeks ago my beautiful daughter was diagnosed with a brain stem tumour DIPG. Hard to fathom particularly as a cancer scientist a kids cancer with a survival of just 10 months. As a dad & husband our world’s in ruins, we cant believe that our sweetness & light will soon leave us pic.twitter.com/WhrmhieG6E
— Matt Dun (@MattDun17) March 10, 2018
The standard treatment for DIPG is palliative radiotherapy, to relieve the pressure of the tumour.
But when Josephine underwent radiotherapy at the Sydney Children’s Hospital in March, and nearly lost her life in the process, Dr Dun could no longer bear the sense of helplessness.
MORE STORIES BY JANE HANSEN:
TRANSPLANTS SAVE 11 LITTLE LIVES IN ONE ‘MAGIC’ MONTH
MIRACLE TREATMENT FOR LEUKAEMIA SAVES DYING AUSSIE BOY
Like the fictional American movie character Forrest Gump, he felt compelled to run.
“Passing Centennial Park I just pulled [the car] over and ran, in the middle of the night, in the rain and I just kept going. I started at 4km then 10km, then 14km and I ran and ran as fast as I could, just to feel alive again and it made me think what I can do,” he said.
He soon realised the best thing he could do, really the only thing he could do, was apply what he knew as a biochemist to finding a cure for DIPG.
And so, in a world first, he is trying to keep his daughter alive by mapping the protein sequences that make up the deadly disease.
“When completed this will be the first description of the DIPG proteome and we hope it will provide experts world over with the clues to help improve treatment,” he said.
“I’m wracking my brain to think outside the box. I’m trying drugs in the lab but coming up with something in real time is ‘pie in the sky’ stuff, but I have the greatest motivation.”
Dr Dun and his network of family and friends are funding the study themselves. Their charity group ‘Run DIPG’ is fundraising and hoping to have runners qualify for the Boston Marathon.
Friends have raised about $20,000 for the research but Dr Dun needs between $150,000 and $200,000 just to pay the salaries of the researchers on the project.
The dire shortfall in brain cancer research funding has already been highlighted and campaigned on by The Sunday Telegraph.
Brain cancer survival rates have not improved in 30 years forcing desperate parents to travel to Mexico to trial experimental therapies at enormous cost.
While the Federal government has announced a $50 million grant, which was matched by Cure Brain Cancer Foundation and mining magnate Andrew Forrest, getting access to funding requires a proven record in the field.
Because Dr Dun’s work has been in leukaemia, he knows he would be knocked back in the short term. And time is not a luxury he has.
In desperation the Duns have turned their attention overseas. Recently scientists at Stanford University managed to kill the DIPG tumours in mice using re-engineered immune cells called Car T cells.
Human trials in Australia may start as soon as next year, and Dr Dun’s research will help focus how the T cells can be re-engineered to best fight DIPG, but the wait is too long for Josephine.
Dr Dun and his wife, who is currently pregnant with their third child, are hoping to get Josephine on the first trial in America this year.
“The therapy involves taking Josie’s immune cells and training them to recognise the tumour,” he said.
“The work so far, has only been performed in mice, however, with the survival from DIPG uniformly bleak, it is worth a shot.
“I’m just trying to keep her alive.”
To help go to: gofundme.com/wcac68-run-dipg