Mark Butler says DIPG funding ‘on the radar’ but makes no commitment to desperate families

As brave 9-year-old Maddy Suy films a movie to spread ‘love, hope and joy’ to other children with highly aggressive brain cancer, the Health Minister is ‘considering’ whether to grant $21m funding for research and clinical trials into DIPG.

Federal Health Minister Mark Butler says he is weighing up his options for funding into brain cancer research and clinical trials.

After several meetings with devastated parents who have already lost children but are fighting for others, and mums and dads desperate to give their dying children a chance, the minister told The Sunday Telegraph that “the government has this on their radar”.

“Research to develop effective treatments is desperately needed,” he said in a written response to questions.

“I have heard this advice and will consider what further action is required.”

Mr Butler gave no indication when he would make a decision.

The minister has held meetings on this issue personally twice and there have been two other meetings with his senior advisory team.

Mr Butler said it was a privilege to meet with families who had gone through the tragedy of losing a child to DIPG.

Ryley Kemp (clockwise, from left), Ruby Pringle and Lucy McAleer all died after battling DIPG.

“They are working through their grief and trying to make a difference for other families,” Mr Butler said.

“It was an incredibly powerful message of how difficult it is to deal with this devastating condition, and the need for the country to step up and give families new hope.”

DIPG researcher Professor Matt Dun appeals to Health Minister Mark Butler for funding.

The minister heard from leading researcher Professor Matt Dun, a cancer scientist who tragically lost his daughter to DIPG and who has dedicated his working life to help other DIPG sufferers worldwide.

With parents Angie Sari-Daher, Tamer Daher, Hanna Pringle, and Beau and Terry Kemp, he founded the advocacy group Australian DIPG families.

As a collective they have met at Parliament House with multiple ministers, including Mr Butler, on a number of occasions.

The families are pleading for an urgent investment of $21 million to make a real difference.

Mr Butler said he had instructed the Health Department “to work with DIPG Australia, including Matt, to find new research opportunities and also find ways in which we can link up with the cutting-edge clinical trials that are happening right now in the United States”.

The minister again said the government had recently announced it was investing more than$700,000 to develop a new treatment that targets DIPG.

“We are exploring research opportunities,” Mr Butler’s statement said.

Kathie Potts, who lost her little girl Annabelle to the monster brain cancer DIPG almost five years ago, has urged the government to act now.

“I am frustrated seeing the same pattern over again,” she has said.

“It makes me really angry and frustrated because all of these children are going through what we went through five years ago. It breaks my heart; it shouldn’t be happening.”

MIGHTY MADDY TURNS FILM STAR TO HELP OTHERS

Her tumour is progressively growing, she can’t use her right hand and she’s having trouble walking — but that won’t stop Mighty Maddy Suy from completing her mission.

The nine-year-old budding movie maker is busy in production of a very special film “that spreads love, hope, and joy” to children facing similar battles.

With the help of fellow superhero actor and filmmaker Maria Tran, from the Phoenix Eye collective, Mighty Maddy has been busy filming scenes for her short fantasy live-action film called “Mighty Maddy’s Mission to the Future”.

Maddy Suy shoots her film of hope for other kids with DIPG.

Actress and filmmaker Maria Tran is working with Maddy.

Brave little superhero Maddy becomes Mighty Maddy for the film campaign. Pictures: Sam Ruttyn

She’s also recording a song and helping Maria and her dad, Alan Suy, bring together voices of doctors, researchers and parents of children who have fought the insidious monsters in their little heads.

“This film is about one girl’s adventures into the imaginative realm where she rescues Tina the sloth while battling a bunch of ninjas with her ‘Mighty’ powers,” Tran said.

She said Alan reached out to say “ his daughter Maddy was also a fighter and that she liked a lot of the action girl power stuff I was putting on screens.”

“To fight this battle, collaboration is key, and seeing Maddy have so much hope, love, joy and fun brings people together on this cause.”

Maddy, always smiling and busy from delivering toys to sick children in hospital, said she was enjoying filming.

“It’s lots of fun,” she said, as she practised flying in her super-cape for the cameras.

Support Maddy’s film journy against DIPG here