The life, death and extraordinary legacy of Maddy Suy

Before her death from DIPG this week, Maddy Suy acknowledged a cure for the horrific disease might not be found but said, with her trademark big smile, “we can only try”. Her dad, fellow parents and dedicated medicos will keep up the fight.

Nobody would ever want to walk in Alan Suy’s shoes.

He’s been confronted with decisions no father should ever have to make.

Put his dying daughter through life-threatening brain surgery, despite doctors telling him the monster in her head is aggressive and inoperable? Or watch her waste away.

Succumb to fear of the unknown? Or watch her cry as another needle goes in, full of the latest liquid hope, a trial drug that might slow the DIPG tumour long enough for her to finish her painting, make another bracelet, sing another song, give her mum Truc one last hug, her adoring little brother and sister one last soothing smile.

It’s an uncomfortable story, the story of nine-year-old Madeline Suy.

Maddy lost her battle with a DIPG tumour and died peacefully this week. Picture: Sam Ruttyn

A story so heavy that parents who have never had to stare down a death sentence diagnosis might prefer to gloss over, flick past for something a little more uplifting.

But it’s a story that if you look past the pain and sadness and despair you will find a regular dad with the fight of a superhero, pushing every boundary, searching for every opportunity to give his daughter a chance.

And it’s the story of a daughter who took every chance with grace.

Mighty Maddy, as she is affectionately known — the face of The Sunday Telegraph’s Maddy’s Wish campaign — died peacefully this week but not without an almighty fight that’s touched so many.

Not only did her story help push the Federal Government to pledge $21m for childhood brain cancer, but she also left her mark with her film Mighty Maddy’s Mission to the Future, where she uses her creative skills to tell of her fight against the villainous cancer.

Maddy was an ordinary Sydney schoolgirl with an extraordinary sense of selflessness.

Maddy Suy with her mum Truc, dad Alan and brother Jamison, at the NSW Art Gallery for the screening of Mighty Maddy's Mission to the Future film. Picture: Tim Hunter

In spite of the brain stem tumour slowly destroying her body, she found joy in dishing out presents to kids in the children’s ward, even though she was more sick than many.

She wrote songs that inspired strangers across Sydney to form their own choir in her honour and she drew pictures that prompted a group of supermarket workers in country NSW to sign up for matching tattoos.

In the last few weeks Maddy was declining day by day as the tumour got bigger and bigger in the part of the brain stem that controls many vital functions such as breathing, heart rate and blood pressure, and the nerves and muscles used in seeing, hearing, walking, talking, and eating.

She stopped walking, then talking a few weeks ago, then she started having more and more trouble swallowing.

Doctors told the Suy family she didn’t have long.

But Maddy was determined to watch her movie on the big screen and made it to the launch at the Art Gallery of NSW a week before she died.

Alan Suy is determined to keep fighting for a cure for DIPG in memory of Maddy. Picture: Sam Ruttyn

Alan told The Saturday Telegraph this week his little girl fought for “every last breath”.

In the days after her passing, Mr Suy said “grief comes and goes but every time I feel sad I try to think of all the happy times and what an impact she’s made in this world”.

And now he will continue the fight for all children cursed with this insidious disease.

“Maddy was one of the longest surviving and highest profile children in Australia to fight DIPG,” he said.

“I owe it to her to keep on fighting and advocating, helping others in a similar situation.”

In the background, Mr Suy has slowly been building his new venture, called Maddy & Co.

“The Sunday Telegraph’s Maddy’s Wish campaign was so successful in that it had gained the attention of the Australian government, but the funding is not sufficient and there needs to be a way to continue funding research and treatment options,” Mr Suy said.

Maddy Suy and dad Alan after she underwent an operation in China. Picture: Sam Ruttyn

Maddy was determined to see her film on the big screen.

Maddy Suy and actress and movie producer Maria Tran, whose team made the movie.

“So we started Maddy & Co which is a business for profit and for purpose.

“We hope to engage the community and generate income and divert these funds towards the causes that are currently ignored or otherwise neglected.”

The first Maddy & Co store will be open in Sydney soon, selling artworks, flowers, bath bombs, soaps, jewellery, colourful nicknacks — all things close to Maddy’s heart.

In the months before her death Maddy once said: “If I’m honest we probably won’t find a cure” for DIPG, then added her big smile as she said: “But we can only try”.

Her dad, an army of DIPG parents, and dedicated Australian doctors and researchers will keep up the fight for a cure and lobby governments for funding.

They are determined to prove Maddy wrong.

At the celebration of her life held on Thursday, Mr Suy said: “Madeline’s light has touched so many”.

“During her nine years, eight months, 29 days on this earth, she’s experienced many extraordinary things in her life,” he said.

“She’s met so many wonderful, kind, caring people and been to so many colourful, exciting places.

“Maddy showed love and kindness every day of her life.

“We did not teach her this. It was within her. We are just blessed to have her.

“She was so selfless, always thinking about others and how they feel. Even on her sickest days, she found the most joy in giving to others.

“Maddy, you may have only lived for nine short years but you showed us what can be achieved and your mission for the future.

“You have encouraged us to follow our dreams. You have inspired us to go above and beyond, and to never give up hope.

“We promise to keep on fighting for your mission, to find a cure, and to help others.”

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