THIS time the black tape on Nick Riewoldt’s left arm was for his little sister, Maddie.

It was Easter this year, Round 1 of the AFL season, and Maddie had died of aplastic anaemia, or bone marrow failure syndrome, six weeks earlier.

Time hadn’t healed anything — it still hasn’t — and when Riewoldt pulled on his footy boots with #FightLikeMaddie inscribed along the side and wound on the black tape that signifies death at the footy club, he broke down.

“It was hard to play, but I wanted to do it,” he says. “The hashtag on social media was #FightLikeMaddie and it was perfect. Three or four times we thought it was over, but she fought. How she was able to pull herself out of those situations was unbelievable.

“It was a weird feeling to play. My brother, Alex, was with me the whole time in the rooms and he gave me so much strength to play.

ROUND 16 ‘MADDIE’S MATCH’ TO RAISE VITAL FUNDS

“I put on the black arm band before the game, like I had a lot of times in my career for people, and I had a moment when I got upset. I never thought I’d be putting one on for my sister.

“And then in the last quarter, I got the whack from behind, whiplash, and the physios came out and the doctor and they were pretty keen to carry me off. I remember saying, ‘There’s f---ing no way I’m getting stretchered off this ground today. No way’.”

Nick and Alex went to the Epworth Hospital for the precautionary scan. “I was just lying there and it was if Maddie had said: ‘Hey, don’t forget about me you blokes. I was in the hospital for seven months’. And so here we were, me and Alex, and we actually had a bit of a chuckle, it was surreal.”

CHUCKLES are rare for Nick and for the rest of his family. Mum Fiona, dad Joe and Alex are living the worst pain imaginable. They have lost a daughter and a sister, aged just 26, and their sorrow gnaws at them every day.

“It’s impossible to describe the pain and it’s impossible to relate or understand it unless you’re in it,” Nick says. “You hear about it and it happens every day to so many people and it’s a part of life. A part of living is dying, but until you are in it, it’s too hard to comprehend.”

Nick is sitting at his kitchen table with a candle soothing the insensibility of death. Grieving, he says, is a maze.

“You grieve from so many different angles. First of all I’m grieving for Maddie because she’s a 26-year-old girl who should be doing so much. I grieve for her for the suffering and for what she’s going to miss out on. You grieve for yourself because you’ve got that hurt that is so hard to deal with and the loss of someone you love. I’m grieving for my brother who had such a special relationship with her. I left home at 18 and it was just the two of them for a long time. I grieve a lot for him.

“And obviously for Mum and Dad. And now that I’m parent, I look at James and I think about how Mum would’ve been when she had Maddie at that age. That’s really hard. And it’s hard to see your parents in so much pain, just hurting so much. For Mum especially. She was at the hospital every day ... every day ... they did everything together because Maddie was so dependent on her support.”

In 2009, life was going swimmingly well for all the Riewoldts. Nick was on top of his game on the field, he had met his wife-to-be in Catherine in Las Vegas, and Joe and Fiona had moved from the Gold Coast to Melbourne for life in the big smoke. Twenty-year-old Maddie tagged along and she was ready to take Melbourne by storm.

Maddie worked in the hospitality industry and was right at home in sports-mad Melbourne. But life changed in 2010. Maddie got sick.

Initially, it was flu-like symptoms and general lethargy. “To be honest, we all thought she was being a lazy 21-year-old, because you can’t actually see the illness,” Nick says.

In the first week of the 2010 finals, tests revealed an “off-the charts abnormality”. She had a very irregular blood count and specialists initially thought it was leukaemia. A week after the Grand Final replay, she was diagnosed with aplastic anaemia, which is part of a group of disorders under the umbrella of bone marrow failure syndrome, and needed a bone-marrow transplant.

“I got to Houston to meet Cath’s family for the first time and Alex was in New York and we had to get a blood test to see if we were a match to have a bone-marrow transplant,” Nick recalls. “I remember asking a woman at the clinic: ‘Is my sister going to die?’. She said: ‘No, she’s young, she’ll be OK’.”

THE CALLOUS KILLER DISEASE THAT STOLE MADDIE’S LIFE

The blood tests revealed Nick and Alex weren’t a match, so Maddie started a treatment of drugs and blood transfusions, which seemed to work. She slowly improved and in 2013 she was in remission and the collective thought was she had beaten it.

In 2014, her blood count plummeted again. The same treatment wasn’t favoured this time round, so the worldwide hunt began for a matching bone marrow donor. One was found in France.

“She was so excited because the prognosis was really good,” Nick says. “That was May last year ... then in July she went into hospital and never came out.”

MADDIE’S final stay in hospital was seven months and she was in intensive care for five of those months. Hospital records show she had the longest-ever stay of any intensive care patient at Royal Melbourne Hospital.

“She was incredibly brave and so strong throughout the process. We were all scared. Every day something new popped up, but I know this might sound strange but I always thought it would be OK,” Nick says.

“The bone marrow didn’t work the first time, too much had happened for it to really grasp and take, so they did it again in November last year. The really sad thing is her bone marrow was working but it was all too massive, her body couldn’t do it any more, couldn’t fight it.”

Maddie’s will to live was no stronger than on Christmas Day.

Christmas lunch was at Nick and Cath’s home and for a time leading up to the day there were hopes Maddie would be out to join the family. It didn’t eventuate. Then on Christmas morning, Nick got a phone call and was told to rush to hospital.

Not for the first time in his telling at his kitchen table, with the candle unwavering, Nick breaks down. He starts talking and stops. His mouth moves, but there is little to no voice, or it trails off to tears.

“Maddie was in a coma ... Mum and Dad had gone in to give her Christmas presents ... Alex and I were here because we were going to have Christmas lunch here and everyone was going to tag team and go into the hospital ... they rang and told us to come in and say goodbye, that we needed to prepare ourselves ... they didn’t think she’d make it through the day.”

She did. Friends and more family descended on the hospital on Boxing Day. One time, there were 40 visitors. Maddie’s friends flew down from the Gold Coast. Another friend flew home from a Bali holiday. Cousin Jack flew in from Tassie. Brendon Goddard was at the MCG for the cricket and made his way.

“It was amazing, she then pulled through on Boxing Day, although they thought it was unlikely,” Nick says. “Then she started getting better, kept getting better and better and better to the point at the start of February, there was talk she could go home. I remember thinking, ‘We’re home here’.

“Her physio was better, she was conscious, she could move her arms, had her tracheostomy tube out, so she could talk. I hadn’t heard voice in four months and she was allowed to have something to drink. Hearing her voice was huge, just hearing her speak ...”

Nick’s words trail off again. “I really thought we were home, but she got one last infection mid-Feb and it happened so quick ... just a few days.”

From the Riewoldt family album

IT’S a period Riewoldt has shut away, perhaps never to be spoken about. The days and hours and minutes and seconds leading up death do that to people. Maddie was unrecognisable and, with family by her side, as they had been every step of the way, the doctor broke the silence. She was gone. “It haunts me,” Nick says. “It’s the one thing I can’t really talk about ... it just haunts me badly ... it’s only been three months. I just can’t let myself go there because it just haunts me. There will come a time, but I’m not there yet.”

As fathers want to forever protect their daughters, the same can be said for older brothers and little sisters. “That was one of the hardest things about the whole saga she faced, it’s having no control,” he says. “I’m a control freak. I need to be in control of everything ... it was the first time in my life I’ve felt totally helpless, totally hopeless ... I couldn’t ... I couldn’t do anything to help her.

“There are no what-ifs because she did everything she could possibly do, she fought as hard as she possibly could. The doctors and nurses did everything they possibly could to help her. Mum and Dad ... I’ve never seen anything like it.

“But there’s lots of whys. Like, why did it happen to her? Why did those drugs not work? Why did the first transplant not work? Why did it happen at this time, why when she’s 21? We couldn’t do anything to hep her but we can now and that’s what we’re doing with Maddie Riewoldt’s Vision.”

The Vision is a foundation — run by family and friends — which will help people with bone marrow syndromes such as aplastic anaemia. As Neale Daniher is raising money to find a cure for motor neurone disease, Maddie Riewoldt’s Vision is raising money for adolescents and young adults with bone marrow failure syndromes.

St Kilda and Richmond will also dedicate their Round 16 clash to Maddie’s memory.

“I don’t want anyone else to sit there and watch their sister, watch their daughter go through hell. It’s horrific to watch it slowly take her life. It’s extremely under-resourced and we want to raise money to find a cure.”

This is not about Nick; it’s about Nick leveraging his profile as a champion AFL footballer to raise awareness.

“She hated the illness. It took everything from her in her prime of her life. It took away her ability to travel, to work, have relationships, have fun, so when she got out she wanted to help people in similar situation.

“She’s done her part. She couldn’t have fought any harder and we now have an opportunity to help other people. We have a responsibility to do that. We have to find a positive out of this huge negative in our lives, otherwise what was the point? We owe it to her.”

It’s now a lifelong campaign for Nick. “And I hope that one day James will take it up,” he says.

JAMES is six months old. He was born December 4, 2014. Aunty Maddie died on February 24. Nick is a religious person, Anglican, and clearly he questions how life can give him James and then life can take away Maddie. “Probably the best thing that can happen to me and hopefully the worst thing in the space of a couple of months. I think James came into our lives for a reason ... he’s brought us a lot of joy in a really dark time.”

Maddie met James only the one time, when Nick and Cath took him to visit Maddie in hospital.

“That was a special day ... she was really happy to see him ... she couldn’t really hold him because she wasn’t strong enough ... I’m so glad it happened because I would hate to have thought they never got to meet ... he won’t remember it, but he will know of her.’’

Time has not yet made a dint on the pain. Nick continually looks at James and thinks of Maddie at the same stage, and then thinks of Maddie going off to school for the first time, and then thinks of Maddie playing sport as a young girl. She grew to a woman while Nick played footy in Melbourne.

“Maddie loved the simple things, she loved family time, she loved footy, she loved sport. She was a pretty shy girl, but once she was in her circle, she was unbelievably feisty and to anyone outside who threatened the family, people would know that on Twitter. She was so loyal.”

One of Nick’s favourite photos is of Maddie, Cath, Mum and Grandma on the concourse, decked in St Kilda gear, before the 2010 Grand Final. “When we were going through a lot of this stuff, I thought maybe this was our family’s Grand Final and we were going to win this one. I remember having those thoughts, strange, irrational thoughts, but until losing Maddie, losing those Grand Finals with the Saints was the worst I’ve felt. It’s not even a blip. It’s just so difficult to see Mum and Dad go through it.”

As Nick sits in the kitchen, he looks at the candle and seems a million miles away. It might never soothe the insensibility of death, but it will never go out. It will forever burn for Maddie.

MRV, to be launched by Maddie’s family today, has two fundraising aims: to support those suffering BMFS and their families, and to help fund new treatments.

Donate at mrv.org.au or text “Maddie” to 0437 371 371

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Photography: Wayne Ludbey

Interactives: Shane Luskie

Video: Craig Hughes

Content producers: Alistair Paton, Michelle Rose