A Bone Marrow Failure Syndrome diagnosis is the start of the most terrifying journey of a family’s life.

When Flynn was just one year old, doctors told his parents he had a Bone Marrow Failure Syndrome.

For years, he needed monthly blood donations - just to stay alive. There’s no cure. And he will face the serious risks of this condition for the rest of his life.

This is the heartbreaking reality of Bone Marrow Failure Syndromes.

Please donate now to stop Bone Marrow Failure Syndromes taking lives, and stand with every family devastated by them.

Donations up to $25k will be DOUBLED by matching funds. Please give before 30 June.

This week, two Australians like Flynn will receive a Bone Marrow Failure diagnosis. One won’t survive.

Your donation will help drive research into new treatments and cures that will save Australian lives.

Your donation will also help wrap families facing a diagnosis with support. You’ll provide expert advice, care and comfort to help them through the darkest times.

Please give generously.

Flynn's journey with Diamond-Blackfan anaemia

Like many parents, Dale and Karen remember the early days of Flynn’s life as a mix of excitement, adjustment and finding their feet with a newborn. Every new parent experiences challenges in those early months - but for Dale and Karen, those challenges quickly became completely different to what they expected.

“It was like nothing we had faced before.”

In those first months of Flynn’s life, there were periods where he seemed unwell, but nothing that clearly pointed to a single cause.

At just seven months old, Flynn became critically ill and was admitted to intensive care with pneumonia. Doctors ran extensive tests, but nothing explained why he had become so sick.

While Flynn recovered from pneumonia and was able to return home, things never fully settled for their young family.

Just weeks after his first birthday, Flynn was back in hospital again. His condition had deteriorated to the point where doctors were urgently trying to understand the cause, and they initially suspected he may have leukaemia - a frightening diagnosis for any family. While Dale and Karen were relieved when leukaemia was ruled out, it was clear something serious was affecting his body.

At just over one year old, Flynn was diagnosed with Diamond-Blackfan anaemia, a rare Bone Marrow Failure Syndrome that affects the body’s ability to produce red blood cells.

Following his diagnosis, Flynn’s care quickly became centred around regular blood transfusions. Often needed every month, they were essential in keeping his blood levels stable.

Whilst these blood transfusions were lifesaving, they also brought challenges, particularly because Flynn was so young. Finding reliable IV access was difficult, and over time, the risk of iron overload became an ongoing consideration.

Dale and Karen saw firsthand how dependent his health was on the generosity of others. Without blood donors, Flynn wouldn’t have had the same chance to recover, regain strength, and keep going.

They became blood donors themselves and took part in awareness efforts to help others understand the real impact of donating.

Blood donation is something that quite literally keeps children like Flynn alive.

As Flynn’s care progressed, doctors introduced medication to help stimulate his bone marrow and reduce his dependence on transfusions. Finding the right dose wasn’t straightforward. It required careful adjustment over time to reach a level where his body could maintain stable blood counts.

Eventually they were able to find the right balance and Flynn’s reliance on transfusions began to reduce. Today, his condition is more stable, but his care continues through regular monitoring, bone marrow testing, and ongoing specialist appointments. When he is unwell, his body has to work harder than most to recover. It’s a reality their family has learned to face together with the understanding that his condition may require lifelong management.

For many years, Flynn’s family navigated this difficult path largely on their own.

Support was difficult to find, particularly for a rare disease. Dale and Karen spent time searching, even considering starting a support network themselves, before realising how challenging that would be alongside everything else they were managing.

When they broadened their search, they came across Maddie Riewoldt’s Vision.

“It was so comforting to find a community who understood what we were going through.”

Through Maddie’s Vision’s National Support Services, the family have been able to connect with people who understand the realities of living with a Bone Marrow Failure Syndrome which has helped them feel less isolated in their journey.

For Flynn and his family, Maddie’s Vision has not just been a source of support, but a reminder that they are not alone.

Now 12 years old, Flynn is doing well. He’s started high school, enjoys spending time with friends, and loves being active - playing soccer, tennis and getting involved in sport whenever he can.

At school, he’s particularly drawn to science, enjoying the chance to experiment, “In science, you can do a lot of cool things,” he says.

Outside the classroom, Flynn has found a passion for acting. He has already featured in multiple Australian television productions, building confidence in front of the camera and embracing opportunities that let his personality shine.

Looking ahead, Flynn has big ambitions and hopes to continue his acting career.

For Dale and Karen, everything they have gone through has made their family stronger, and they are so grateful to watch Flynn grow and pursue the things he loves.

“It has made us more of a unit,” says Dale.

Flynn is also deeply connected to his Indigenous heritage and his family’s role within the community.

They are part of the Wurundjeri people of the Kulin Nation, with strong ties to the community across Melbourne. For Dale, this connection is lived through his work, caring for Country, working closely with waterways, land and environmental management, and engaging with the community to ensure cultural knowledge and practices continue to be shared and understood.

Flynn’s family are descendants of the great James Wandin, the first Indigenous player for the St Kilda Football Club.

As part of the Maddie’s Vision community, Flynn was selected as the Junior Mascot for the final Maddie’s Match in 2025, running out onto the field with the St Kilda Football Club – a powerful moment, recognising his journey, his strength and his family’s legacy.

At 12 years old, despite everything he has had to overcome at such a young age, Flynn is already carving out his own path in life.

Behind him is a family who have been there every step of the way – navigating uncertainty and challenges they never expected to face, while making sure Flynn still has the space to be a kid and chase the things he loves.

Maddie Riewoldt’s Vision is committed to supporting research that gives children with rare conditions like Diamond-Blackfan anaemia greater hope for the future.  We have funded research led by Associate Professor Amee George at the Australian National University to better understand Diamond-Blackfan anaemia and explore potential new treatment options. More recently, Maddie’s Vision supported Amee and her team in a successful Medical Research Future Fund application focused on mRNA therapies. mRNA acts like a temporary instruction manual for cells, helping them make important proteins they may be missing.

The team is now exploring whether this approach could one day help improve blood cell production in people with Diamond-Blackfan anaemia, and through Maddie’s Vision’s role in consumer engagement, we are helping ensure patient and family voices are part of that journey.

Flynn’s story is not just one of resilience, but of love and commitment - from Flynn, Dale, Karen and the people around them.

While Diamond-Blackfan anaemia will always be part of his life, it does not have to define his future. Surrounded by family, culture and community, Flynn continues to move forward, embracing every opportunity to discover who he wants to be.

A big thank you to our dedicated supporters

Your donation allows Maddie's Vision to continue our work to stop Bone Marrow Failure Syndromes taking lives and stand beside families devastated by them.