Little survivor Maddy Suy needs a Christmas miracle

Nine-year-old Maddy loves to draw, colour in, make new friends and go to singing lessons and has no time for thoughts of dying — despite the massive brain tumour that is assaulting her body. Read her story — plus those of other brave young battlers.

• Maddy’s bravery must be backed by funding

Exclusive: Little Maddie Suy recently told her mum and dad she wanted to change the spelling of her first name – she didn’t want it to end with “die”.

The nine-year-old who loves to draw, colour in, make new friends and go to singing lessons, has no time for thoughts of dying, even though she has spent the past three years hearing doctors discuss the monster inside her head.

Statistically speaking, Maddy has already beaten the odds – the average survival time for patients with malignant high-grade brain stem glioma, known as diffused intrinsic pontine glioma (DIPG/DMG), is nine to 12 months.

But now that her tumour is growing, and she is starting to show on the outside the symptoms of its assault on her little body, Maddy needs a miracle.

In an exclusive interview with the Sunday Telegraph, Maddy’s dad Alan revealed he had researched every possible trial and was pinning his hopes on an experimental cancer vaccine not yet trialled on children.

Maddy Suy has an aggressive brain tumour and her dad Alan is seeking medical help in the form of a trial. Picture: Sam Ruttyn

“Every option I have is purely experimental and comes with a lot of risk,” the father of three said.

“We are exhausting all options and would consider ourselves lucky to be accepted in any trial, let alone be picky.

“The government has made some progress of late but the money thrown into research is years away.

“What is frustrating is the kids that are fighting need treatment options now. We can’t afford to wait.”

Maddy is one of the longest known survivors of DIPG in the world.

Mr Suy says her quality of life has been preserved because of a number of factors, including radiation therapy, a drug trial, and surgery.

Maddy Suy would love to make it into Year 4 this year and make new friends. Picture: Sam Ruttyn

Dr Charlie Teo successfully removed a portion of the tumour shortly after she was diagnosed in 2020 and gave a portion to the laboratory at Newcastle University under the care of Professor Matthew Dun.

“The post-MRI scans following Dr Teo’s surgery showed a significant debulking of the tumour,” Mr Suy said.

“Another MRI scan taken after six weeks of radiation therapy saw a further shrinkage of the tumour in the brain stem region.”

Maddy remained asymptomatic for 36 months until a couple of weeks ago, when she started to show weakness in her right side.

In a devastating, but not unexpected, setback considering the ferociousness of DIPG tumours, a scan in June 2022 – 18 months after the surgery – confirmed Maddy’s tumour was growing.

Mr Suy and his family travelled to the US in search of treatment options, but returned to Sydney and enrolled Maddy in the PNOC022 clinical trial cohort 3.

Maddy and her dad Alan Suy at their Sydney home. Picture: Sam Ruttyn

Maddy is running a toy drive for kids at The Children’s Hospital at Westmead. Picture: Sam Ruttyn

The trial is across 31 hospitals around the world and is extending the lives of many kids with DIPG after Professor Dun discovered two drugs in combination – ONC201 and paxalisib – had a synergistic effect.

If it were not for Professor Dun’s research and him presenting this to the Pacific Pediatric Neuro-Oncology Consortium, the trial may not yet have not arrived in Australia.

“We need more government funding to go towards research and supporting these sorts of discoveries,” Mr Suy said.

Maddy remains on the trial, but if the tumour grows beyond a certain size, she will be forced off.

Mr Suy said his options now were limited, but he would never give up.

He is hoping Maddy will hang on long enough for her tumour sample to be used to develop a vaccine for not just her, but other children suffering – and he’s acutely aware he is running out of time.

Each day, the doting dad watches Maddy getting a little weaker and he is on the lookout for any more dreaded signs. She’s experiencing weakness down one side of her body and is having trouble with her balance and walking in a straight line.

She asks to be carried in her father’s arms.

Mr Suy, a dad of three, is pleading with authorities to move quickly so Maddy can make it to year 4 at school.

“Time is of the essence and we are in a position where we don’t have many options to choose from,” he said.

“I have to consider options overseas such as sonodynamic therapy at UCSF and Car-T trial at St Jude Children’s Hospital in Memphis.

The family are doing all they can to buy more time for Maddy. Picture: Sam Ruttyn

“We have to exhaust all options and choose the most effective one, no matter the cost.

“This plea is not only about our beloved daughter, but also about all children of Australia as well as the whole world, hence significant and of utmost urgency.”

Maddy, meanwhile, has her focus on Christmas, her final days at school and everything year 4 has to offer.

“I love making new friends, I love meeting new teachers, I love everything about school,” Maddy said this week.

She’s working on a film project — “Mighty Maddy’s Mission to the Future” — and preparing her toy drive to give the sick kids at The Children’s Hospital at Westmead some smiles.

“For Christmas, I want a claw machine – one of those big machines full of toys that the claw comes down and grabs the toys,” she said during a visit to the park this week.

“I’m happy for a smaller one, though not the biggest one.”

Evie’s story

Eleven-year-old Evie doesn’t speak or smile much any more and her tortured parents concede they are watching her personality “disintegrate into nothingness”.

“It’s a brutal way of putting it but it’s like she’s dying already,” said Pia Whipps, just 10 months after her daughter was diagnosed with a DIPG brain tumour.

Evie Whipps was diagnosed with DIPG brain cancer earlier this year.

Evie’s mum says she is watching her daughter’s personality disintegrate.

The mum knows she will soon fight tooth and nail with other parents for funding to find a cure for the horrible disease but, right now, her energy needs to be with Evie.

Speaking from her hospital bedside after her daughter was again admitted for an infection, Pia told The Sunday Telegraph this week she was “sometimes frustrated and other times disgusted” about the lack of funding for DIPG research.

“I have been sitting back and watching what all the other DIPG families and researchers have been doing, the great work advocating and I am extremely impatiently waiting for change because I am horrified to think that more families after us will still be in this position.

“It’s horrible.”

Evie has been on a trial but was removed when her rumour continued to progress.

She is due to start a new trial next week.

“Considering Evie’s (disease) progression, when it comes to this trial, if it were up to me I don’t know if I would have done it,” she said.

“But we have given Evie complete control over her body and what happens and empowered her with the details to make informed decisions.

“We will support anything she wants to do and she wants to fight.

“She is putting up one hell of a fierce fight.”

Giang’s story

Before diagnosis, Giang Phan was a talented rhythmic gymnast who was busy competing at state and national competitions.

“She loved to crochet and made beautiful crochet bees in her free time. Painting and cooking were also her hobbies,” he mum Nhi said.

Giang Phan died in September from DIPG brain cancer.

Giang kept dancing while battling her cancer.

“This cruel disease prevented her from pursuing her passion for rhythmic gymnastics but could not take away her positive spirit.”

Giang continued to do K-pop dances and made a number of street dance videos with her friends while she battled brain cancer.

“When the tumour progressed and took away her right side mobility, she still baked and made beautiful silhouette paintings on glass with her left hand,” her mum said.

Giang fought the greatest fight of her life against DIPG with bravery and grace for 15 months. She passed away in September, “forever 14”.

Her mum says wishes no other parents had to hear that their child’s illness had no cure.

The Sydney teenager made a selfless decision to donate her brain tumour for research and “continues to fight against this monster disease, even after leaving this world”.

Giang’s mum said her lifetime wish is to see the cure.

“I wish no parents have to sit in a room, hearing the doctors saying that your child can only live for another 9-12 months and there is no cure for it.

“DIPG is a death sentence that no children should be given. Cruelly, this disease has no known causes and can hit anyone. Giang was a totally healthy and sporty girl until the diagnosis.”

Ruby’s story

Queensland mum Hannah Pringle said little Ruby will” always be the definition of perfect”.

“She had long blonde curly hair that she was so proud of and a permanent smile on her face that always brought people joy”.

Unfortunately, the torturous nature of DIPG was “out looking to sabotage Ruby”.

She woke up one night with a headache, her moods had changed, she looked pale, she was tired, dizzy, and losing fine motor skills.

After the dreaded diagnosis and a tumultuous time navigating the health system, Ruby’s parents opted not to do a biopsy of the tumour due to safety concerns and the little six-year old was ineligible to enrol in clinical trials.

Ruby was just six.

Her mum said the last five months of her life were torture.

“My poor innocent child, just six years old, had been tortured for the past five months. It was time she rested and had a chance to be at peace,” she said.

Ruby died in September this year. She donated her tumour for research in the hope it will save other children.

“I plead for you to say Ruby’s name, to remember her beautiful long curly hair, her smile, and her pure love for life,” Ms Pringle said.

“She deserved to live a full happy life. Please, we need to fund DIPG research to save our children.”

Chandler’s story

Early last year Chandler Jahn had symptoms of nausea, vomiting, extreme headaches and double vision.

GP after GP put his symptoms down to a virus or perhaps migraines but a week later his mum Jacqueline noticed that one of Chandler’s eyes was looking lazy.

On February 10, 2022, the kind-hearted little boy with “intelligence and empathy beyond his years” underwent a series of MRIs.

Chandler died in July when he was 10.

“I knew something was very wrong, but never did I suspect that my eight-year-old son would be diagnosed with terminal brain cancer,” his mum Jacqueline said.

On February 18 Chandler was diagnosed with DMG. He died in July this year.

“Our life was shattered in an instant,” his mum said.

Chandler in better times.

His mum says it is a “cruel disease”.

Chandler underwent radiation therapy, 33 rounds, five days a week and “never once complained”.

Radiation worked well, shrinking the tumour by more than half its original size. Throughout radiation and for some months following, Chandler was symptom-free.

“Myself, and all that loved Chandler had fallen into a false sense of security, thinking that Chandler was the miracle,” his mum said. “The child who would beat this cruel disease.”

But in the August of 2022, Chandler had a seizure.

“One of the very cruel symptoms of this disease. This was one of the most horrifying things to experience. The fact that Chandler had been doing well for so long, it was unbelievably shocking and gut wrenching.”

In July this year he lost his battle. Chandler passed away peacefully at home, surrounded by love, just 10 days after his 10th birthday.