AFL WAG Jordan Ablett holds back tears during emotional Sunrise interview about son Levi’s rare genetic condition: ‘All we have is today’

AFL WAG Jordan Ablett struggled to hold back tears on Wednesday as she opened up about her son Levi’s rare genetic condition.

Jordan, who shares Levi, six, with husband, footy great Gary Ablett Jr, appeared on Sunrise to discuss Levi’s diagnosis and her new memoir One Day At A Time.

Just over a year after Levi was born in 2019, he was diagnosed with Menkes, a rare recessive disorder that affects copper metabolism, leading to neurodegeneration, connective tissue problems, and short life expectancy.

Speaking to hosts Natalie Barr and Matt Shirvington, an emotional Jordan, 33, said that despite the couple’s son being non-verbal he has already taught her and Gary so much.

‘Sometimes as parents, we kind of envision the perfect outcome and we create these scenarios in our head as though they’re going to happen and as though they’re guaranteed,’ she said.

Pausing to compose herself, Jordan added that Levi’s condition had helped put things into perspective. 

AFL WAG Jordan Ablett struggled to hold back tears on Wednesday as she opened up about her son Levi’s rare genetic condition 

Just over a year after Levi was born in 2019, he was diagnosed with Menkes, a rare recessive disorder that affects copper metabolism, leading to neurodegeneration, connective tissue problems, and short life expectancy 

‘I think having Levi has taught me that nothing is guaranteed in life and all we really have is today,’ she said.

‘It’s about making the most of each day and not holding so tightly onto the things in this world and our dreams and desires because they’re just not guaranteed, they’re not promised to us, so it’s about holding those things loosely and then being able to adapt when the plan changes.’

The mum of three was almost moved to tears again when Matt asked about the strength of her relationship with Gary in the face of the ordeal.  

‘We’ve definitely had our lows, and I really feel for other parents that are raising a child with a disability because I get it, I fully get it, and there are so many layers, she said.

‘I think people from the outside might… sorry… kind of presume that it’s so heavily physical, but it’s so mental as well.

‘But I could not have asked for a better husband and a better father to raise Levi and to spend my life with.

‘He’s been absolutely incredible. Not once has he ever made it about him and about those plans and those things that we anticipated — that’s just irrelevant.’

Admitting that dealing with Levi’s diagnosis had been a ‘struggle’, Jordan added it was one she could not have fought with out such a strong support network around her.

‘I think having Levi has taught me that nothing is guaranteed in life and all we really have is today,’ she said

‘It was tough, but thankfully I was just surrounded by the most amazing people in my friends and family, and even the greater community was incredible,’ she said.

Jordan kept her son’s medical diagnosis under wraps as she learned to ‘process’ his heartbreaking condition, but revealed to VWeekend last week she was ready to talk about it. 

‘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.’

According to 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, and connective tissue problems.

Symptoms also include severe neurological issues such as seizures, hypotonia, failure to thrive, and neurodevelopmental delays.

The mum of three was almost moved to tears again when Matt Shirvington asked about the strength of her relationship with Gary in the face of the ordeal

‘He’s been absolutely incredible. Not once has he ever made it about him and about those plans and those things that we anticipated — that’s just irrelevant,’ she said  

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 neurological symptoms if initiated early.

Aside from Levi, Jordan and Gary also share daughter Grace, four, and son Ezra, two.