'Our newborn’s lazy eye seemed harmless. Then a 10-minute appointment broke our hearts.'

When Carlie and Daniel Steffe welcomed Mia Rose into the world in October 2021, they were full of joy as their tight-knit family unit grew to five.

But the newborn bubble burst all too soon. A few months after Mia Rose's birth, her parents noticed something unusual: she had a lazy eye. Concerned, they made a trip to their local GP, which led them to an ophthalmologist.

It took all of 10 minutes for the specialist to tear their world apart.

"She put the magnifying goggles on and looked at Mia Rose's eyes, and she'd seen it before so she knew immediately what it was," Daniel told Mamamia.

"Then in the room she said, 'Unfortunately, I've got some bad news. Mia Rose has a rare form of eye cancer.'"

Little Mia Rose. Image: Supplied.

Everything came crashing down.

"That was a world-crumbling moment," Daniel recalled. "An immediate wave of devastation and confusion and horror."

Carlie and Daniel were left reeling.

Did she say cancer?

Mia Rose was diagnosed with bilateral retinoblastoma — a rare cancer that develops in the retina, the light-detecting tissue at the back of the eye.

That very day, the couple was told they needed to pack up and head from the Gold Coast to Brisbane, so Mia Rose could begin chemotherapy immediately.

"It's emotionally draining, but then you have to immediately turn into a superhero parent," Daniel said. "You just have to put life on hold and focus on it."

The first few days were gruelling. Friends and family shared Carlie and Daniel's questions and fears, but answers were slow to come.

Mia Rose with her parents, Daniel and Carlie, brother Oliver and sister Lily May. Image: Supplied.

A 'constant battle'.

Saving Mia Rose's life became the singular focus. Her eyesight came next.

Mia Rose underwent six rounds of systemic chemotherapy to shrink the tumours in her eyes — a gruelling ordeal for anyone, let alone a baby. But the tumours were relentless.

"They didn't stop coming… it was a constant battle," Daniel said.

Doctors turned to intra-arterial chemotherapy and intravitreal chemotherapy, which is administered directly into the eye. For this, the family had to travel to Sydney every few weeks to see a specialist at the Children's Hospital at Westmead.

"It has been a long, detailed battle. You'd have a check and there would be nothing new, and you're ecstatic. And then three weeks later, it'll be back. 'Nope, sorry guys, we got more tumour here around the optic nerve, so you need to go to Sydney tomorrow,'" Daniel said.

Mia Rose is a beacon of light in her family's world. Image: Supplied.

Each day was a struggle. Amid the chaos, Daniel and Carlie leaned on their support system, and the Starlight Children's Foundation became a key pillar for the family.

"I now believe we couldn't have done that journey without them," Daniel said.

Mia Rose's primary healthcare team were, in Daniel's words, the "most beautiful people, smartest people on the planet" who provided critical expertise. Meanwhile, Starlight brought moments of joy that "made the whole journey bearable".

"You're fasting a baby who's breastfeeding, and you can't explain to them what disease they've got and what treatment there is and why you're fasting," Daniel explained. "But you don't need to if the Starlight Foundation is there drawing or playing dress-up."

Mum Carlie with Mia Rose. Image: Supplied.

Hope in the darkest days.

Mia Rose's journey has felt like two steps forward, one step back for the family. Until now.

"It's only really been in the last six months that we haven't had anything new come back. We're in a really good space now," he said.

Her tumours are currently stable, and she undergoes regular checks to monitor for any new developments.

Throughout it all, little Mia Rose has been a beacon of strength. Her parents say the silver lining in such a challenging situation is seeing the brave young girl she is becoming.

"Mia Rose is just this ultra-positive, ultra-confident, ultra-tough, ultra-strong three-year-old that has walked this incredible path with nothing but smiles and a bold stride," Daniel said.

"We're not there yet, but when this is behind us, I think the positive will just be the embedded sense of resilience and confidence and 'I can do anything.' She's got it at three, so… I don't think anyone's going to get in her way for the rest of her life."

Mia Rose playing with Captain Starlight in hospital. Image: Supplied.

Looking back, Carlie and Daniel acknowledge that even the darkest days have shaped their family. But they're also filled with gratitude for the moments of joy and support along the way.

"We'll also look back and remember all those fun times with Starlight and the happiness that she has and the photos we've got of them playing," Daniel said.

"Having moments of positivity in and amongst all the challenges is irreplaceable."

Mia Rose's family are sharing their story in support of the Starlight Foundation's Super Swim Challenge. Super Swim encourages Aussies to swim during the month of February and raise $5 million dollars to bring joy to sick kids in hospital. You can register to take part in the challenge here.

Feature image: Supplied.