VWeekend: Surrounding Levi with love: Jordan Ablett on joy, loss and everything in between
In a new book about love and loss, Jordan Ablett has shared the heartbreaking but also heartwarming and ever-hopeful story of her and AFL legend husband Gary’s journey with their son Levi, who has Menkes disease.
Parenting
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Jordan Ablett is brave, considered and measured.
When asked why she now feels ready to tell her full story – and largely that of her son Levi – she gives a response that you’d expect from a fiercely protective mother.
It’s been nearly five years since Jordan and husband, footy legend Gary Ablett Jnr, shared that their precious son has a rare degenerative disorder.
The only other part of his condition they revealed was that what Levi was suffering from carried a short life expectancy.
“I always knew deep down that I would eventually be open and transparent about it … I don’t know what good can possibly come from not being that,” Jordan says.
“I didn’t want people to misinterpret my hesitation to share as being ashamed of Levi. It was purely a matter of me just trying and needing to process first myself. I knew that once I could do that, I’d be in a position where I could then offer encouragement and hope through our journey.”
It was the end of 2023 when Jordan embarked on a process of healing and wanting to put pen to paper.
Writing a book in her own words about her experiences, about a life that’s been so public yet private, was what she knew she needed.
She met with the publisher HarperCollins and her co-author Ellen Whinnett, and the wheels were set in motion. Her son Levi and his condition were the crux of the story but so was the loss of her beloved mum, Trudy, who passed away from cancer, at just 62, in August 2020.
“I wanted to write the book for a few reasons,’’ Jordan says.
“For people that are in a similar situation who may be in that first year of their child’s life, sensing something and sitting in the unknown, I thought that maybe by sharing our journey it might provide some answers or at least some direction.
“For people who have lost loved ones, particularly a parent, and who are grieving.
“Hopefully by sharing my experience it will help others feel less alone. It’s hard when you’re hurting and the world keeps spinning. It can make you feel like people don’t understand and feel what you feel, but that’s just not true.
“Of course, we all have challenges and hurt that we’re trying to navigate. It’s just easy to forget others do too because we fall into the trap of focusing on our struggles and weaknesses, but see everyone else’s victories and strengths.
“Writing the book was also so much for me as well. Levi was diagnosed in 2020 and for so many of those years, deep down, I wanted to talk to people about it, I really did, but was still getting my head around it myself.
“For so long, I just wasn’t in a place where I could talk about it. I just had to keep all the details guarded, which is also very much me – I’m protective of my family, those closest to me and other people’s information.
“Finally I arrived at a place of acceptance, and finding things to be grateful for amidst it all … this is my story, this is Levi’s story and I’ve embraced it … it was just finding the right time, I guess. I’ve always loved writing and knew that when I was ready to share my story it would be with a pen and a paper.”
Jordan and Gary’s story with Levi is complex and heartbreaking but also full of hope.
As she reveals in the book, they started to have concerns about his development six months after his birth in January 2019, but were often told by medical professionals that “babies develop in their own time”.
He was a happy baby but couldn’t sit independently, had poor head control, couldn’t be too upright otherwise his head would fall forward, eating became impossible and during tummy time he would quickly become distressed. He was also non-verbal.
It wasn’t until May 2020, after many tests, much delving and anxious waiting, that they were finally given a diagnosis at the Royal Children’s Hospital. Levi has a serious genetic disorder known as Menkes disease. Children with the condition cannot absorb copper normally, which greatly affects their global development. As they grow, they usually fail to thrive, and they are vulnerable to respiratory infections. With low muscle tone, it is much harder for children with Menkes to clear their lungs and fight infections.
On top of having to process the diagnosis, came the shocking revelation that children with Menkes have a very short life expectancy – most living to just four or five.
“If they had have given him the diagnosis (earlier) how would that have changed anything? The reality is with his condition it wouldn’t have,” Jordan says.
“It was shocking … it was hard to first accept but it’s no one’s fault.
“The treatment Levi is on is not a cure, it’s merely slowing down the progression.
“The tricky thing is, which I didn’t communicate in the book because it’s impossible to get everything across, is that all the research is on a child being diagnosed within the very early days after they’re born.
“Levi started the treatment at 16 months because we didn’t know he had the condition until then.
“It was May 2020 that we got the diagnosis, so we weren’t sure how effective the treatment would be but, of course, wanting to help Levi, we were prepared to still try.
“We’ve actually got him off the injections at the moment purely because the research is up to three years, or not too long after I think, and being on copper medication for too long can negatively affect the kidneys and lead to kidney failure. After conversations with his neurologist we decided to take him off it and give his little body some time to just be. If we feel there is any regression, which at the moment there isn’t, then we will put him back on it.”
Helping the new parents as they navigated a different life to what they envisaged with an additional-needs child, were the arrivals of their next two adored children, daughter Grace, born November 2021, and second son Ezra, born July 2023.
“With Levi, I love him so much but it was a different kind of parenting and different to how I imagined,’’ Jordan says.
“So when Grace came along it was the expected kind of parenting … just to have those moments with her that I didn’t get with Levi, I appreciated them so much and I didn’t want to take those for granted.
“Gaz and I are constantly mindful now when Gigi and Ez do things that might be a little frustrating, we try and shift our perspective – we’re so grateful that they’re at least able to do whatever it is that they’re doing.
“Levi has a carer who comes a few days a week and she’s just amazing! Levi loves being at home and we do as much as we can to involve him in what we’re doing … he’s most comfortable at home. Gaz and I feel very confident now in our ability with Levi and our parenting. In the early days we didn’t really know much, the medical world was all really new to us. We did everything that was scheduled in for us, but we know his needs the most now and we feel far more equipped to say yes to this or no to that.”
Jordan grew up on the Mornington Peninsula, but now she and her family live in Jan Juc, next door to Gary’s mum Sue and her husband Phil.
“The kids absolutely love living so close to them, they’re so helpful and we appreciate their love and all their support,” she says.
Jordan is grateful for the 28 years she had with her own mum and the close bond she continues to share with her sisters and best friends, Keinzley and Nina. There isn’t a day that goes by she doesn’t miss her mum or “wish for another phone call”.
The very first time she heard from Gary was in October 2012, through her sister’s now husband, singing star Michael Paynter, who was friends with the AFL superstar.
At first she was unsure when she got his text message, and didn’t know much about footy. But she ended up moving to the Gold Coast after she and Gary struck up a relationship.
In the book she shares her regret over struggling to initially adapt to the Queensland lifestyle.
“That first year, 2016, I wasn’t settled and I was so young and missing my family,’’ Jordan reflects. While laughing, she says: “If I could go back I would have a good word with my 24-year-old self.”
She also expressed that, at that age, it all seemed like a lot.
“But looking back it really wasn’t that big in the grand scheme of things,” she says.
“After finishing his five-year contract (Gary) signed on for three more years which of course he was ready for, but I was overwhelmed at the thought of living interstate.
“In that 2016 season I absolutely expressed my homesickness to Gaz.
“I have always been so family driven and Gaz has too but he was at a different stage of his life. I just have the regret of not being as present on the Gold Coast as I could have been and really doing everything I could to help him manage everything he was, and on top of his football commitments.
“I’ve spoken to Gaz about it so many times and G is amazing at saying, ‘Jords, you’ve got to let that go.’
“We came back (to Geelong) at that time for the right reasons with family, and (his late sister) Tash particularly, we can’t be looking back.”
Gary went on to have one of footy’s greatest careers, and his brother Nathan also played at Geelong and the Gold Coast Suns.
As the son of Gary Ablett Snr, also widely regarded as one of the best players of all time, Gary will be long feted in footy folklore for his enviable achievements: 357 games, two Brownlow medals, two premierships, eight All-Australians, five Leigh Matthews trophies, six club best and fairest awards and many more accolades after retiring at the end of 2020.
For his 300th game Jordan collected letters written to Gary by other greats including Scott Pendlebury, Luke Hodge, Lance Franklin, Chris Judd and one particularly moving letter from his dad which details his pride in Gary Jnr following in his footsteps and for being a “man of God”.
“As a father, the way you’ve faced and responded to the many challenges that have come your way and how you’ve conducted yourself both on and off the field make me very proud of the man that you have become,’’ the letter from Gary Snr read. “Thank you for the honour that is mine because of you! Once again, congratulations. I love you very much. Dad.”
The motto that has served the Abletts well is taking things one day at a time – the fitting title of Jordan’s book.
They are a busy family of five and they are happy. Already at age six, Levi and his radiant smile have defied the odds and Jordan is uplifted by that thought each day. “I don’t know if I made it necessarily clear in the book, people often contact me and share their struggles and talk about their admiration for me,’’ Jordan says.
“But I absolutely have my days where it all feels too much, there are days where I could be more patient, there are days where I could be more hopeful about our circumstances.
“I just wanted to express that … but overall and at the core, I know we are blessed and I know that when those hard days come, and they do, it’s so important to not give in to those emotions and not let them dictate your day and take away from the gift that it is.
“For him to still be Levi and not have the condition would be amazing. But Gaz and I always remind ourselves that Levi knows no different. The silver lining I can see is that Levi is completely untouched by this world.
“He’s innocent, he’s pure, there is nothing tainted about him in any way.
“And he’s totally content.
“We just hope that he loves his life. Enjoys it and feels loved which I know he does.
“All the things you’d hope for, Levi is no different. We want him to be happy, always have that joy in him and that the bright light that shines through him is never diminished. That’s every parent’s dream for their child.”
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