Maddy Suy’s wish to meet her popstar idol Taylor Swift

Little Maddy Suy is always belting out a tune — and it’s always Taylor Swift. And, considering the fight she has had with aggressive brain cancer, it’s no surprise her favourite song is Fearless.

It doesn’t matter whether she’s getting dressed for school, drawing her favourite flower, or sitting in a doctor’s surgery waiting for her latest brain scan results, little Maddy Suy is always belting out a tune — and it’s always Taylor Swift.

And, considering the fight she has had over the past three years, it’s no surprise this brave nine-year-old’s favourite song is Fearless.

“It’s my favourite song because it tells you to be brave,” Maddy told The Saturday Telegraph.

Despite battling a rare, aggressive brain tumour that doctors found when she was six, Maddy always has a smile on her face and fills a room with joy through her singing and dancing.

In January, after a tough day of radiation — her third round — Maddy still managed a karaoke song on her couch, courtesy of Taylor Swift. She even hosted a Taylor Swift birthday party, dressing up with all her friends, not letting the monster in her head dampen her sparkle.

Number one Swiftie Maddy Suy threw a Taylor Swift birthday party. Picture: Tim Pascoe

Maddy’s dad Alan said the Year 4 student first took to Tay-Tay when she was six years old — the same year she was diagnosed with a diffuse intrinsic pontine glioma (DIPG), an aggressive type of childhood cancer that forms in the brain stem. It is incurable.

“She was really into the lyrics. I think she can relate to the songs and catchy tunes,” her dad said.

Maddy on her first day of Year 4 this week. Picture: Supplied

Maddy is gearing up to see her idol live in concert on February 24, courtesy of The Starlight Foundation.

She’s busting for a chance to meet the international sensation in person, but knows there’s a long list of fans with the same dream.

Maddy though might just be the girl who deserves a ­miracle meeting more than anyone.

“I would tell her I am her biggest fan, I admire her so much,” Maddy said.

“If I got to meet her I would give her some of my artwork,” she said, adding she didn’t want anything in return.

“Nothing, just a photo, anything will make me happy. And I would like her to sing my Mighty Maddy song with me.”

Maddy has written and ­recorded that song with a Sydney choir.

A BATTLE TO WIN FUNDING FOR KIDS

While Alan Suy works hard to make every dream of his daughter’s come true, he’s devastatingly aware her brain tumour is a ticking time bomb.

Mr Suy will try anything — even if it offers just a one per cent chance of keeping Maddy alive.

His best shot at the moment is an experimental cancer vaccine developed by Australian researchers, where the vaccine is created from the patient’s own tumour cells then introduced into the patient to produce an immune response.

Maddy with her devoted Dad Alan Suy. Picture: Tim Pascoe

“It has been tested on adults and Maddy could be patient zero once it obtains TGA and ethics approval,” he said.

“Funding is required to get this trial into pediatrics.”

Alan is calling on charities around Australia willing to collaborate to help families battling DIPG right now, as the wait for federal government funding for research continues.

“We need to find practical ways to help fighting kids and families. There is a massive gap here,” Mr Suy said.

“I cannot wait any longer. Time is precious.

“Research takes years. We need treatment options to be readily available now, without the red tape. Maddy is worth more to us alive than dead. I am driven to do something about it now rather than wait, because we are sadly running out of time.”

Mr Suy said the parent group that has been closely working with federal Health Minister Mark Butler’s office in the past year said they were making good progress in their quest for $21 million funding towards research targeted at DIPG.

Mr Suy hopes charities might be willing to help fund treatment trials, initiatives and support groups today.

He is asking an charities willing to get on board to contact the Sunday Telegraph’s “Maddy’s Wish” campaign at [e-mail]

BIG WIN ON BRAIN CANCER MEDICINE

The federal government has secured access to an experimental medicine already helping eight-year-old Eve Daher in her fierce battle against the highly aggressive brain cancer known as DIPG.

Eve’s parents have spent in excess of $110,000 on ONC201 and are relieved they and other Australians will now have free access thanks to intervention from federal Health Minister Mark Butler and intense lobbying from the neuro-oncology team at Sydney Children’s Hospital.

Diagnosed in March 2021, Eve started on paxalisib and ONC201 – the trial created by Australia’s Professor Matt Dun – after completing radiation therapy. The family has been sourcing ONC201 from Germany on their own at $3500 a month plus a 10 per cent importation tax.

Mr Butler contacted the US pharmaceutical company, Chimerix, on behalf of Eve through their expanded access program and the Therapeutic Goods Administration’s administered special access program for unapproved medicines.

Chimerix will also extend the medical scope to include certain patients who have H3 K27M mutation and midline gliomas, including those patients who have been taking ONC201.

In addition, the TGA is providing information to Chimerix on Australia’s requirements for any future registration of the medicine in Australia.

Eve’s mum Angie Sari-Daher told the Saturday Telegraph families had been trying to get ONC201 into Australia since 2018.

“Kathie Potts needs a special shout out for the work she did back in 2018 trying to bring it here,” she said, referring to another brave mum who lost her daughter Annabelle.

Since Eve’s diagnosis 34 months ago, her tumour has shrunk by 80 per cent.

“The tumour has remained stable but it is still there, a monster lurking in the background of our beautiful girl’s brain which there is a 99 per cent chance it will wake up at any moment,” Ms Sari-Daher said