Gary Ablett Jr and wife Jordan share emotional journey of six-year-old son Levi's Menkes disease diagnosis
Now, as Levi turns six, the couple has broken their silence in a raw interview, peeling back layers of grief and resilience tied to a diagnosis.
Jordan, 33, has described the moment in May 2020 when doctors identified Menkes disease, a rare genetic disorder disrupting copper metabolism, as a turning point that 'completely changed' their lives, speaking to
the Herald Sun.
'It was shocking… of course it was hard to first accept,' Jordan admitted while recalling the prognosis: Neuro-degeneration, connective tissue degradation, and a life expectancy rarely surpassing early childhood.
Levi's condition, caused by mutations in the ATP7A gene, manifests in sparse hair, seizures, and developmental delays.
Most untreated children die before age three, but copper histidinate injections, started early, offer a fragile lifeline. The medication 'slows the progression,' Jordan said, emphasising that every milestone, like Levi reaching six, feels special.
Behind closed doors, the Abletts have grappled with Levi's inability to speak or walk independently. 'He's changed me' Jordan shared in a 2021 interview with the Good Friday Appeal, referencing the constant vigilance against aspiration risks that could send food into his lungs.
Regular telehealth check-ins with Melbourne's Royal Children's Hospital punctuate their routine, with respiratory health dominating concerns, according to the same interview.
Yet amid the medical jargon, Jordan clings to Levi's 'constant sunshine', as she posted on Instagram, also his laughter, his bond with younger sister Grace, and his quiet determination. 'His life has been a message,' she insisted in the Good Friday appeal article, rejecting pity.
In her upcoming memoir One Day At A Time, Jordan details the 'happy and sad tears' of parenting a terminally ill child, framing their journey as a call to cherish fleeting moments, as announced in her October 2024 social media posts ahead of the book's April 2025 release.
With Menkes having no cure, the Abletts now channel their energy into advocacy, hoping their story softens the isolation felt by similar families through initiatives like Jordan's 2022-launched House of Hope.
Teasing her memoir on Instagram Jordan wrote: 'I am so excited to finally share with you all that I have been working hard behind the scenes for almost one year now, writing my very own book!'
'I can't begin to explain how special this feels for me, and for my family, who have journeyed all of life's highs and lows with me, feeling every single bump and joy along the way. There have been plenty of tears cried while writing this book, both happy and sad tears, but being able to share my story, and hopefully encourage others, has made all 'the feels' worth it.
'I hope that by reading my story, parents of children with a disability will feel less alone, more capable, and will, if they don't already, look at their child through a different lens, seeing them as what they are, a genuine treasure!'
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