UPDATE JULY 20, 2016
Maddie’s Vision today announced two $500,000 medical research grants to further investigate BMFS and support passionate and talented Australian medical researchers.
This is a significant milestone as there has never been any research done at a national collaborative level in this area.
— Maddie’s Vision (@MaddiesVision) July 20, 2016
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Nick Riewoldt is reflecting on how losing his 26-year-old sister Maddie has changed him. “What’s most difficult to come to terms with is that it’s fundamentally changed you as a person to your absolute core,” he says.
“But outside everything is the same. The world goes on, but you’ll never be the same. I don’t know to what extent it’s changed me. It’s changed the way I think about what’s truly important. It really angers me that it takes something like this to make that happen.”
What is really important? “Family, relationships [are important]. I think we’ve been changed because we’ve been inspired by Maddie. Maddie’s inspired all of us. She has changed the way I will raise my son [six-month-old James]. He won’t remember ever meeting her but he’ll certainly know about her. It’s changed me so greatly that it will change the way I approach fatherhood and raise my family.”
Nick, 32, St Kilda’s star forward for 15 years, is universally known – alongside his reputation as a fearless, highly skilled player – as a thoughtful and articulate man, a much-loved elder statesman of the game. His younger cousin Jack, 26, a forward for Richmond, is also a star, known for his mischievous grin, cheeky demeanour and goal-kicking skills.
The Riewoldts have joined me to talk about the loss of Nick’s sister – and Jack’s cousin – Madeleine Riewoldt, who died in February aged 26.
Maddie was diagnosed in 2010 aged 21 with a bone-marrow failure syndrome called aplastic anaemia, a rare blood disease. For five years Maddie battled the illness. She underwent two bone marrow transplants, hundreds of blood transfusions and spent the last seven months of her life in hospital.
Last month the Riewoldt family launched Maddie Riewoldt’s Vision, a foundation established to help adolescents and young adults suffering from bone marrow failure.
“It’s going really well,” Nick says of last month’s launch. “The response since the launch has exceeded all our expectations. We’ve been embraced and know how many people we’ve touched. We’ve had a lot of correspondence coming in from people who want to help and other sufferers grateful for more awareness being brought to the cause.”
Maddie Riewoldt’s Vision aims to raise money for research, provide support for sufferers and ultimately find a cure through research.
“We’re just a normal family and friends getting it done,” says Nick, “so we’re not professionals in this area, but we’re extremely passionate, which is why we’ve been able to achieve so much in such a short space of time.”
Nick says Maddie’s courage in the face of her five-year illness was extraordinary. “The #FightLikeMaddie is really born out of her determination and courage and ability to fight through unspeakable trauma and struggle,” Nick says. “To watch someone go through that is incredibly difficult, but to go through it yourself … I just can’t imagine how hard it was. That’s why I think we’ve been so well embraced because people have been so touched by her determination and ability to fight.”
I suggested the community has been inspired by Maddie’s determination. “We’ve certainly been inspired by her bravery. She certainly showed a level of courage and fight that I didn’t know she possessed until she was really, really tested and was fighting for her life.
“We were told three or four times to say goodbye and prepare for the worst. Even the medical staff were stunned by her ability to pull herself out of horrible situations and get back to a level where we thought we’d be taking her home soon.
“In the end it just became too much. ‘Strong’ and ‘brave’ and ‘courage’ – they are words that are thrown around a lot. Upon reflection I don’t think I’d really seen it until I saw it in my sister.
“There are no ‘what ifs’ because she did everything she possibly could to pull through,” Nick says of Maddie’s struggle. “Our family did everything possible from a support perspective. The doctors, [led by Professor] David Ritchie at Royal Melbourne, did everything in their power to help Maddie. She had to have the bone marrow transplant otherwise she wouldn’t have survived [for the time that she did].
“But there are a lot of ‘whys’, and they are hard to come to terms with. Why did this illness manifest in her at that time? Why did the bone marrow transplant not work? Why does this illness attack young adults and adolescents in particular?
“And that’s why we’re establishing Maddie Riewoldt’s Vision, to try and answer those questions, and because it was Maddie’s desire to be an advocate and a champion for the cause when she got out of hospital, which we always thought she would.”
The Riewoldt family surrounded Maddie with their love and support. Maddie and Nick’s mother Fiona was at her daughter’s side every day for the last seven months in hospital. “Maddie suffered for five years,” Nick says. “She was really dependent on medical help pretty much right throughout the process. She went a year without transfusions in 2013. Mum was with her every step of the way.
“It’s difficult to see your mum and dad grieving the way they are, and your brother the way he is, and her friends. But we’re all in it together and we’re all supporting each other as best we can.”
The Riewoldt cousins grew up in Hobart. Their fathers, Joe and Chris, are brothers. When Nick was 10, his family moved to Queensland and Nick then moved to Melbourne when he was drafted by St Kilda as number one draft pick in 2000. His family re-located to Melbourne six years ago.
At 26, Jack Riewoldt was just six weeks older than Maddie. I asked about his memories of growing up with her. “Most of the memories, the ones you really hold on to, are Christmas – a big time for us and our family. Maddie and Nick and [brother] Alex would come down to Tassie where our grandparents lived and we’d have Christmas there.
“Being so close in age, it hit home hard. When it’s someone so close to you, and so close in age, you can nearly see yourself in their shoes sometimes. It’s tough.”
I asked how they were able, in the midst of such sadness, to continue focusing on such a public pursuit as football. “Last year it was tough,” says Nick. “There was not the level of dread or concern because there was still a really good chance for Maddie to fully recover. [But] it was hard. It was frightening at times, when she was moved to ICU. When she was OK she would sit in there with her iPad and watch the footy.
“I’d play and go straight in after the game to the hospital. Football became a bit of a release, a bit of an outlet. This year it’s been difficult, but it’s also been the platform on which we’ve been able to do what we’re doing with the Vision.”
Both Riewoldts credit the football community with strong support.
“The football community is incredible in the way it rallies around its own,” says Nick. “Maddie was such a big part of the St Kilda family and the connection with Richmond, too. The St Kilda and Richmond people have been fantastic. And [in] the wider football community, the support we’ve received has been remarkable. It’s times like this that you are really thankful to belong to such a great fraternity.”
Says Jack: “It’s really interesting being involved in the AFL community. As much as it’s a very work-orientated relationship with coaches and players from all across the country and with different backgrounds, the way a club can bond together to get around a person when they’re struggling is quite special.
“It’s something that I’ve reflected on, that I’m lucky I’ve had such good networks around me. From the time of Madeleine’s passing, and the weeks leading into the season, the amount of care and empathy shown by my teammates, people close to the club and the family towards me and my little brothers … asking how Nick and his family are going … Even since the launch of MRV the amount of support we’ve had from people wanting to do their little bit, or take some slack off you, or donate money or time … has been really inspiring.
“I think we’re both very blessed that we’ve got a great family and great friends and people around us who have supported us through this time.”
And Nick at St Kilda? “The football club has been terrific,” he says. “Initially just the support was fantastic. The understanding. Little things. Dropping meals off to my place and to mum and dad. Matt Finnis [CEO] has dropped meals off. Teammates, coaches, commercial op [operations] staff … the way they’ve embraced Maddie’s Vision … I’m really grateful.
“I’ve been at the football club a long time, 15 years, and I’ve never been more proud to be a St Kilda person.”
Nick says the Vision is a mission for life for him. “I would love to think that my son works in it one day and fights for this cause. It will be something our family is always really passionate about … Until we find a cure, which is what we want to do, we are going to be fighting for those people, so they don’t have to suffer the way Maddie did.”
St Kilda and Richmond will play “Maddie’s Match”, a fund-raiser, on July 19 at Etihad Stadium. “It’s going to be charged with emotion,” says Jack. “Seeing supporters wearing purple [Maddie’s favourite colour] will be something very special for us both. I don’t know what to expect. You could end up bursting into tears halfway through the second quarter. You just don’t know.
“We get a chance to honour our cousin and sister’s legacy and what she wanted and how she fought. We’re very lucky and blessed to have a stage to do this.” Talking about his much-beloved sister is, of course, difficult, and Nick sheds a tear as he speaks.
I ask if it was an easy decision for the family to establish Maddie Riewoldt’s Vision. “Maddie was so resolute in her desire to work in this space,” says Nick. “As you’ve seen I find it really hard to talk about. Some days I can do it, other days I find it a real struggle. It would be easier to not talk about it. I don’t relish reliving all that in my mind but it’s not about us or our grief; it’s about making sure that other people don’t have to suffer through what Maddie suffered through.
“Her legacy will be saving other people’s lives. Is there any greater legacy that you can leave? I can’t think of one. And that’s why we’re so proud of her. It’s not fair that she has to be the reason, but maybe that was her purpose in life, to bring this to people’s attention. Maybe she suffered so that others can live.”
The Vision means Maddie’s dream will live.
“It keeps her alive,” says Nick. “It keeps her story and her fight alive.”
Maddie’s two favourite AFL teams, St Kilda and Richmond, have united in support and will play “Maddie’s Match” on Sunday, July 19, from 4.40pm at Etihad Stadium. Both team jumpers will be supporting Maddie Riewoldt’s Vision.
“Maddie’s Match” is the first major fund-raiser of Maddie Riewoldt’s Vision, with $5 from every ticket to go towards the foundation.
» Visit for tickets and more information. Fans are asked to wear purple, Maddie’s favourite colour, to the match.
» Exclusive Maddie Riewoldt’s Vision Merchandise will be for sale at Etihad Stadium from the Saints Locker outlets inside Gates 5 and 7.
» SMS “Maddie” to 0437 371 371 #FIGHTLIKEMADDIE