'We cry every day': doctor's heartbreaking quest to find cure for cancer that killed his little girl

Photos; Dr Matt Dun and his beautiful girl, Josie. Supplied.
Photos; Dr Matt Dun and his beautiful girl, Josie. Supplied. 

Dr Matt Dun has faced the ultimate race against time to save his daughter, Josie, from a horrifying form of childhood cancer known as DIPG.

When the researcher's little girl was diagnosed with the incurable brain cancer in 2018 at the age of two, he channelled all his efforts into helping find a potential treatment for the terrifying disease. 

Tragically, Josie died six months ago after a 22-month battle and Dr Dun's relentless work around the clock wasn't enough to save his beautiful girl.

Photo: Dr Matthew Dun, by Wolter Peeters, The Sydney Morning Herald.
Photo: Dr Matthew Dun, by Wolter Peeters, The Sydney Morning Herald. 

"It's been very tough," Dr Dun tells Essential Baby. "There are no words to describe it. My wife and I have tears every day. My three-year-old son always wants to know why things die now.

Some days are better than others, but every day we cry at some point and try and pick ourselves up to keep going."

Despite his heartbreaking loss, the father-of-three is determined to help other families going through the same devastating diagnosis. 

He is continuing his DIPG research project at the Hunter Medical Research Institute in Newcastle with the same sense of urgency and complete dedication. 

DIPG, or diffuse intrinsic pontine glioma, claims 20 Australian children every year and has an average survival rate of just nine months - the worst of any childhood cancer.

Advertisement

"It's such a horrific thing to happen to a family, particularly to such beautiful young kids," Matt says. "One day you're taking them to daycare, the next day they're having general anaesthetic and an MRI and discussions about a cancer thats untreatable. "

"I don't want any other family to hear those words.. 'we don't have any treatment for you'. I want them to have hope."

While Matt's team have already made several breakthroughs to better understand the disease, and even helped buy his precious Josie some additional time, he admits that because the cancer is still so under-researched, they are really only "scratching the surface." 

Photo: Supplied
Photo: Supplied 

"The work we did with in the lab and the treatment Josie received while she was with us gave us some great clues into how we might improve the outcomes for kids with DIPG," he explains. "We hope our preliminary results will help inform future clinical trials that will hopefully take place in Australia in the not-to-distant future."

"My driving force is to build as much awareness about DIPG as possible so the world's most innovative and intelligent researchers come on board - and hopefully one day we find a cure." 

In order to achieve his objective, Matt has also set up a charity called RUN DIPG, with every cent raised going towards research. It is also provides invaluable support for families who are currently going through or who have battled DIPG.

Photo: Dr Matt Dun was devastated when his daughter was diagnosed with incurable brain cancer. (Supplied)
Photo: Dr Matt Dun was devastated when his daughter was diagnosed with incurable brain cancer. (Supplied) 

"We can't provide miracle cures right now, but at least having the ear of someone who has been through it and understands, helps," Matt explains. "I communicate with families every day, providing an outlet for them to talk."

According to Matt, the impact of watching a child go through DIPG is horrific. The brain stem cancer is complicated and the medical side effects are numerous. 

"As the disease takes it cuts off their ability to move, to speak, to swallow and to breathe - it really takes a toll on the family," Matt explains.

"It's such an aggressive tumour and all-encompassing experience that it leaves people, like us, absolutely devastated."​

Phoebe, Josephine (Josie), Matt and George Dun.  .
Phoebe, Josephine (Josie), Matt and George Dun. . 

The cancer researcher is quick to sing the praises of his "remarkable" team at the University of Newcastle, who work extremely hard and with the same sense of urgency as Matt. 

"We've always had the patient's best interests at heart, but it became very personal for everyone in the team to support Josie's journey. At the end of the day we lost our little girl, but we have gained a lot of information that we hope will help other families of kids with DIPG."

He continues: "We just want to provide options that don't exist, particularly in Australia. We need to reverse some of those horrifying statistics."

To find out more and support Matt's incredible work, go to rundipg.org.

You can hear more about Matt and Josie's story tonight on SBS Insight at 8.30pm.