Jobaaj Stories
Understanding Menkes Disease: A Family's Journey and Hope for the Future
AFL legend Gary Ablett Jr. and his wife Jordan have bravely shared their six-year-old son Levi's battle with Menkes disease, a rare and debilitating genetic disorder. Their public disclosure, coming alongside Jordan's upcoming memoir, "One Day At A Time," offers a poignant glimpse into their journey and shines a light on this often-unknown condition.
What is Menkes Disease?
Menkes disease is a rare genetic disorder affecting copper metabolism. Mutations in the ATP7A gene prevent the body from properly absorbing and utilizing copper, leading to severe developmental delays, neurological problems, and other health complications. Symptoms can include sparse, kinky hair, seizures, and failure to thrive. Without treatment, most children with Menkes disease die before the age of three.
The Ablett Family's Story
Levi's diagnosis in 2020 was a devastating blow for the Ablett family, particularly given Jordan's mother's concurrent battle with lung cancer. While they initially chose to keep Levi's condition private, Jordan now feels it's important to share their story to offer hope and support to other families facing similar challenges. Despite the heartbreaking prognosis, Levi continues to bring joy to his family, demonstrating incredible resilience.
Treatment and Hope
While there's currently no cure for Menkes disease, copper histidinate injections can help slow the progression of the disease. Early intervention is crucial, and Levi's treatment has allowed him to surpass typical life expectancy milestones. The Abletts are advocates for early diagnosis and treatment and support research into finding a cure.
A Call to Action
The Ablett's courageous decision to share their story highlights the importance of raising awareness for rare diseases like Menkes. Learn more about Menkes disease, support research initiatives, and consider reaching out to organizations dedicated to supporting families affected by rare genetic disorders. Their journey is a testament to the strength of the human spirit and the unwavering love of a family facing extraordinary circumstances.
