Maddie Riewoldt’s vision sees one nurse supporting families

Eight years after Maddie Riewoldt lost her battle with a rare bone marrow disorder, her legacy is helping to make a difference.

Zahra is ready for Maddie’s Match on August 13 at Marvel Stadium. Picture: Wayne Taylor

As the parents of a toddler newly diagnosed with a rare and life-threatening bone marrow disorder, Anna and Erin McMahon were not only overwhelmed and terrified, but also in need of expert support.

It would come in the most unexpected way.

The family was introduced to the Bone Marrow Failure Syndrome Telehealth Nurse Service funded through Maddie Riewoldt’s Vision.

If ever there was an example of how one nurse, Mei ling Yeh who is now caring for 86 patients across Australia, is making a difference, this is it.

It is also the perfect illustration of how the vision of one young woman can be life changing.

Zahra, 4, with mum Anna: the family is benefiting from Maddie’s Vision. Picture: Wayne Taylor

Mrs McMahon said nurse Mei ling Yeh surrounded them with support, care and valuable information as they prepared for a gruelling round of tests and treatments that confirmed Zahra had a type of Bone Marrow Failure Syndrome (BMFS) known as aplastic anaemia.

Maddie, the sister of St Kilda great Nick Riewoldt, died from aplastic anaemia in 2015. It is a blood disorder where the immune system attacks blood forming stem cells and this leads to bone marrow destruction and failure.

Maddie was 26 and her family said then that as her fight was ending she asked them to make her a promise that nobody else would go through what she had. Maddie’s Vision is her legacy.

It has now raised close to $9 million that has helped to fund 36 cutting-edge medical research projects and unique support and education services including the Australian-first telehealth nurse.

It is rare – one Australian is diagnosed with a BMFS every three days, but half will not survive.

Haematologist Dr Lucy Fox says thousands more Australians are living with complex health issues BMFS can cause and many will develop related conditions such as cancer.

Her research has been funded by Maddie’s Vision for the last five years and has seen breakthroughs crucially helping to identify and accurately diagnose BMFS.

Her work at Peter MacCallum Cancer Centre in Melbourne uses genomic testing so that patients can access the lifesaving treatment that is right for their specific condition.

“There are different types of bone marrow failure and genetic testing helps us … optimise treatment. Achieving the best outcomes for patients depends on us understanding why it is occurring,” she said.

She said gene editing therapies – which means that the genetic mistake in someone’s bone marrow can be edited to change the genetic mutation so it doesn’t persist – is also promising.

Dr Fox says Maddie’s Vision is also keen to bring novel gene therapies to Australian patients.

“There are clinical trials overseas now and we have several interested scientists and clinicians in Australia working towards that. It is reasonable to hope these therapies will come to Australia in the next decade.”

Every year in memory of Maddie, St Kilda hosts Maddie’s Match in a classic St Kilda v Richmond game to raise awareness and funds for vital research projects to find new treatments or cures.

This year’s Maddie’s Match is on August 13 at Marvel Stadium

Nick Riewoldt with a collection bucket that will be at the game. Picture: Michael Klein

Secondary schoolteacher Anna McMahon took her daughter Zahra, now 4, to hospital expecting doctors to diagnose a virus or suggest an iron supplement for the pale and lethargic toddler.

“She was getting bruises and little rashes, but everyone kept telling us that was normal for a toddler starting daycare,” Mrs McMahon said.

“And while doctors didn’t seem concerned, at the back of my mind I had that gut feeling something wasn’t right.”

Her instincts were spot on.

Zahra was diagnosed with severe aplastic anaemia, a complication of Bone Marrow Failure Syndrome.

In the weeks and months ahead she became a regular outpatient at the Royal Children’s Hospital receiving blood and platelet transfusions and dressing changes.

“We were in survival mode and a state of shock. Everything that could go wrong, did go wrong.

“Initially we didn’t know what questions to ask.”

Telehealth nurse Mei ling Yeh funded through Maddie Riewoldt’s Vision guided them through the diagnosis, the treatment and supported them as they started to comprehend what was coming.

Friday was a big day for Zahra; her 18-month review following a bone-marrow transplant.

“Touch wood all is going well. Zahra is at kinder now,” she said.

For Zahra and her family, that now includes little sister Ayasofya, 18 months old, they say they always had the support of the hospital, but having the telehealth nurse was that extra pair of ears who knew the hospital and knew about BMFS.

“We would have been lost without her,” Mrs McMahon said.