#FightLikeMaddie: The mission to banish bone marrow failure
At just 26, Maddie Riewoldt died of a rare bone marrow disorder. This weekend, AFL players and fans will rally together in her honour – and brother Nick couldn’t be more proud.
As fans gear up for Maddie’s Match on Sunday, St Kilda champion Nick Riewoldt talks to The House of Wellness about his late sister and the work of the charity set up in her name, Maddie Riewoldt’s Vision.
Maddie Riewoldt’s story
When Maddie was 20, she was diagnosed with a serious and rare disorder known as aplastic anaemia.
The condition meant Maddie’s bone marrow was unable to produce enough red blood cells, which made her more susceptible to infections, becoming anaemic and bruising and bleeding. There is currently no cure.
While fighting the condition, Maddie went through chemotherapy, two bone marrow transplants and more than 100 blood transfusions.
After a brave fight, Maddie died surrounded by her loved ones.
Maddie Riewoldt’s Vision was created to honour the 26-year-old’s unwavering fighting spirit, to better understand bone marrow failure syndromes such as Maddie’s condition, and to support others battling such diseases.
“We want all families to feel we are their voice in a situation that you can truly feel very alone,” says Nick.
What is bone marrow failure syndrome? (BMFS)
The umbrella term refers to a number of syndromes, including Maddie’s condition, whereby bone marrow ceases production.
Since our bodies rely on bone marrow to stay healthy, when it stops being produced, it can have a detrimental effect on our health and can be terminal.
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Current treatments involve repeated blood transfusions and bone marrow transplants, extending the life of those with the condition.
Researchers are still trying to find a cure.
Maddie Riewoldt’s Vision hopes to one day change this, raising much-needed funds for medical research to better understand BMFS and discover improved treatments, with the ultimate goal of identifying a cure.
The importance of Maddie’s Match
Now in its fourth year, Maddie’s Match is played between Victorian AFL teams St Kilda and Richmond in round 15, with funds raised going towards Maddie Riewoldt’s Vision.
Nick played more than 300 games for St Kilda and was the club’s longest-serving captain, while cousin Jack Riewoldt is still a star forward for the Tigers.
But with Nick retired from AFL and Jack recovering from an injury, this year will mark the first time no Riewoldts have taken part in the match.
“It will be strange without a Riewoldt on the field,” says Nick.
“Jack and I will be watching the game together with family and friends, but we’ll also be busy getting around Marvel Stadium with a range of fundraising activities taking place including Maddie’s Challenges.
“I’m captain of Team Riewoldt so it will be entertaining for fans and I’ll be hoping to raise as much funds as possible.”
Clearly proud of Maddie’s Match, Nick is quick to praise the football community’s continued support of the event and Maddie Riewoldt’s Vision.
“Embracing charity matches and causes like this is something that the football community does as well as anything; we’ve seen it with a variety of causes and we’re extremely grateful to be able to use the football platform,” he says.
“To be embraced by football supporters the way we have has been overwhelming at times, it’s incredible.”
What the future holds
As for the long-term goals of Maddie’s Match, Nick dreams of a future where it will be no longer needed.
“In 20 years I hope there isn’t a need for Maddie’s Match because I hope that all the amazing support and fundraising efforts have resulted in outcomes for bone marrow failure sufferers improving to the point where funding for medical research is no longer needed; in other words we have found a cure,” he says.
While a cure is the ultimate goal, the charity has contributed to a number of bone barrow research findings and developments.
“Maddie’s Vision has created a National Centre of Research Excellence in Bone Marrow Biology. This centre brings together 15 new medical research projects and several are in aplastic anaemia,” says Nick.
“Importantly, this centre has created the first national platform for researchers to collaborate.
“Our very first project was funding for a registry to collect all the diagnoses across the country; this had led to a clinical trial with a new treatment and also a pilot program giving access to genetic testing.
“Having genetic testing available to all newly diagnosed young people has already given doctors more tools and patients are receiving more precise, personalised treatment.”
Nick still can’t believe how quickly the event has grown, with its success only further driving him to honour Maddie and those suffering similar conditions.
“I don’t think any of us anticipated just how big this would become has quickly as it has,” says Nick.
“That being said, we are more determined than ever to continue the fight so that no sufferers or their families will go through what Maddie went through.”
Maddie’s Match is at Marvel Stadium in Melbourne on Sunday, June 30, at 1.10pm. If you can’t make it, donate at Maddie Riewoldt’s Vision or text “Maddie” to 0400 662 662.
