Daniel Milligan
It wasn’t until Levi was about nine months old that Jordan and Gary Ablett Jr first started to suspect something different was going on with the beautiful baby whose smiles and laughter lit up their lives.
Levi struggled to hold up his head unsupported, wasn’t forming words and hadn’t progressed to solids. Yet, he was a “really happy baby”, and for these first-time parents, he was an utter joy to behold.
Their world changed forever a few months later when their baby boy was diagnosed with a rare condition called Menkes, caused by a mutation or change in his DNA, which Jordan had unknowingly passed on to Levi.
“I felt I was somehow to blame and had inflicted pain on my own child, something no parent would ever want to do,” Jordan writes in her book One Day At A Time.
OUR BRAVE BOY
The condition is progressive and cannot be cured. Most children diagnosed with Menkes live to just four or five.
“Gaz and I have had to confront the hard truth. We don’t know how much time we have left with Levi,” she says. “Every day we do get with him is a blessing.”
With Levi having celebrated his sixth birthday in January, he’s already shown he’s every bit the fighter just like his legendary dad, who famously played his last ever game with a broken shoulder in Geelong’s 2020 AFL Grand Final loss against Richmond.
Levi is non-verbal and has brittle bones, yet at 17 months he was able to stand for the first time with the support of a standing frame, a new experience that left him beaming in delight.
“It was the day we got to see our brave boy standing upright for the first time,” writes Jordan, 33, who suffered the heartache of losing her mum Trudy to cancer shortly after Levi was diagnosed.
“If I look and catch Levi looking at me, he will stare intently into my eyes, then break into an enormous smile. It’s really the most heartwarming thing. He loves holding our hands too.”
Jordan and Gaz, 40, have previously shared some of their journey with Levi but until now have never revealed his exact condition or diagnosis. Jordan hopes her memoir will inspire other parents.
“Levi has very much taught me patience and to really be present,” the mum tells Woman’s Day.
“Parenthood is so busy, and we can easily find ourselves rushing. All I have to do in those moments is look at him and I’m reminded to slow down and enjoy the simple and beautiful things in life.
“The way I see Levi smile and belly laugh at the smallest detail, like the tree leaves moving while the wind blows. It makes me think about how although we’re always looking, we don’t necessarily always see.
“Levi sees and appreciates everything because he’s not in a rush and he’s content. I love that about him! He teaches me a lot in many ways.”
Jordan and Gaz now have two other children, three-year-old Gracey and 22-month-old Ezzy, who were both born without Menkes, and “adore” their big brother, who Jordan says has inspired “beautiful qualities” in them both.
Jordan says there’s no doubting the depth of love Levi feels for his mum and dad and Ezzy and Gracey, who gifted Jordan the great joy of being called mum for the first time four years after she actually became a mum.
“Hearing those words and even, ‘I love you,’ brought me so much joy,” she says.
FEELING HIS LOVE
“Although I don’t hear Levi say those words, I feel his love every day in the way he smiles at me and the way he wraps his arm around my neck, using all his strength to squeeze it.”
Jordan and Gaz, who played 357 games for the Geelong Cats and the Gold Coast Suns, find strength in their faith and prayed for God to heal Levi early in the diagnosis, and still believe he can. But they also take it one day at a time and refuse to let what the future may hold overwhelm them.
“If I knew today was going to be my last day, most of the things I choose to do, or worry myself about, wouldn’t get a single second of my time and energy,” Jordan says.
One Day At A Time by Jordan Ablett is out now. Grab your copy here.
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