Gary Ablett Jr and his wife Jordan have opened up for the first time about the rare degenerative disorder which their six-year-old son Levi is currently dying of.
The AFL WAG, 33, has kept her son’s medical diagnosis under wraps until now as she learns to ‘process’ his heartbreaking condition, but has revealed in the upcoming VWeekend on Saturday she is ready to talk about it.
Sharing details of his rare disorder, Jordan said Levi was diagnosed with Menkes, a rare recessive disorder which affects copper metabolism, leading to neurodegeneration, connective tissue problems and short life expectancy.
‘It was shocking… of course it was hard to first accept,’ Jordan said of the diagnosis they received from his doctors in May 2020, adding the medication he is currently on will only ‘slow the progression’.
‘I know we are blessed and I know that when those hard days come, and they do, it’s so important to not give into the emotions that follow and let them dictate your day and take away from the gift that it is,’ she continued.
‘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.’
Gary Ablett Jr, 40, and his wife Jordan, 33, have opened up for the first time about the rare degenerative disorder which their six-year-old son Levi is currently dying of
According to the The Menkes Foundation, Menkes is a recessive disease linked to the X chromosome and is caused by gene mutations of the copper transporter ATP7A.
The condition is characterised by distinctive clinical features, including sparse and de-pigmented hair, connective tissue problems.
Symptoms also include severe neurological issues such as seizures, hypotonia, failure to thrive, and neurodevelopmental delays.
Mortality is high in untreated Menkes disease, with many patients dying before the age of three years old.
There is currently no complete cure for the disorder, but patients who are treated with parenteral copper histidinate (CuHis) can increase survival and lessen the neurological symptoms if initiated early.
The revelation of Levi’s medical diagnosis comes after Gary, 40, and Jordan celebrated their son’s sixth birthday in January.
Jordan posted a series of heartwarming photos to Instagram at the time, writing: ‘Happy Birthday sweet boy—Thanks for six years of constant sunshine!’
Jordan is set to open up about the challenges of raising a child with a disability in her new memoir One Day At A Time.
The AFL WAG has kept her son’s medical diagnosis under wraps until now as she learns to ‘process’ his heartbreaking condition, but has revealed in the upcoming VWeekend on Saturday she is ready to talk about it
Sharing details of his rare disorder, Jordan said Levi was diagnosed with Menkes, a rare recessive disorder which affects copper metabolism, leading to neurodegeneration, connective tissue problems and short life expectancy
Teasing the book on Instagram in October, the mother-of-three said she shed plenty of tears while completing the memoir and hopes it offers hope to other parents who shares similar challenges.
‘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!’ she said in a lengthy post.
‘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!’
