A Family's Heartbreak and Hope
It’s hard to imagine the strength it takes to share something so deeply personal, especially when it involves your child’s life-threatening illness. But that’s exactly what AFL legend Gary Ablett Jr. and his wife Jordan have done. They’ve bravely opened up about their six-year-old son Levi’s battle with Menkes disease, a rare and incredibly difficult genetic disorder. Their story, shared alongside Jordan’s upcoming memoir, "One Day At A Time," is a powerful testament to their resilience and a much-needed spotlight on this often-unknown condition.
What on Earth is Menkes Disease?
Honestly, I’d never heard of it before. It’s a rare genetic disorder that messes with the body’s ability to process copper. A mutation in the ATP7A gene prevents the body from absorbing and using copper properly. This leads to all sorts of devastating problems, including severe developmental delays, neurological issues, and other serious health complications. You might see symptoms like sparse, kinky hair, seizures, and failure to thrive. Without treatment, most children with Menkes disease don’t make it past the age of three. It’s heartbreaking.
Levi's Journey
Levi’s diagnosis in 2020 was a crushing blow for the Ablett family, especially with Jordan's mom battling lung cancer at the same time. You know how sometimes things just spiral? It felt like that. At first, they chose to keep Levi’s condition private. But Jordan now feels it’s important to share their story, not just for themselves, but to offer hope and support to other families going through something similar. Despite everything, Levi continues to bring joy to his family – he’s incredibly resilient.
Fighting Back: Treatment and Hope
There’s no cure for Menkes disease yet, but there’s treatment. Copper histidinate injections can help slow the disease’s progression. Early diagnosis and treatment are absolutely crucial, and Levi’s treatment has allowed him to exceed typical life expectancy milestones. That’s something to celebrate. The Abletts are now strong advocates for early diagnosis and are passionate about supporting research to find a cure. It’s inspiring to see.
Why This Matters
The Abletts’ courageous decision to share their story is a huge step in raising awareness for rare diseases like Menkes. It reminds us how important it is to support research and to reach out to organizations dedicated to helping families dealing with rare genetic disorders. Their journey is a testament to the power of love, hope, and the incredible strength of the human spirit in the face of unimaginable challenges. It’s a story of heartbreak, yes, but also one filled with unwavering love and remarkable resilience. It's a story worth hearing.
