Jordan Ablett opens up about her son’s heartbreaking illness

Their may never speak, but there's one thing that keeps Jordan Ablett hopeful about her son’s rare genetic disease.

Levi is three years old and has never spoken a word. It is now likely that he will never speak.

His parents, former AFL legend Gary Ablett and his wife Jordan have opened up about their son’s heartbreaking illness in the hope of helping other children.

Jordan Ablett with her son Levi. Picture: Supplied

Levi was diagnosed with a rare degenerative disease in 2020 leaving him unable to speak. He is also vulnerable to aspirating, which is when food, drink or stomach contents can get into the lungs. This can cause lung damage and increases the risk of pneumonia.

“We’ve always had to blitz every bit of food for him, making sure it’s as smooth as possible so that it goes down correctly,” Ms Ablett said.

“He has a wide team who monitor his health … low muscle tone and a few other contributing factors (mean) he is far more prone to picking up viruses and unfortunately, doesn’t have the capacity to fight them as well as others at his age.”

Levi’s parents, former AFL legend Gary Ablett and his wife Jordan have opened up about their son’s heartbreaking illness in the hope of helping other children. Picture: Supplied

Despite being unable to communicate, Levi and his parents have the strongest bond.

“I do feel as though I’ve really learnt to understand him over the years. I have had to put a lot of confidence in my parenting,” Ms Ablett said.

“It’s also difficult because I’d love to just hear his thoughts, have a conversation with my boy and for us to know that he understands how much we love him.”

While Levi needs constant monitoring and health check-ups Ms Ablett is impressed with his resilience.

“Levi’s doing really well at the moment,” she said.

“It’s hard to measure exactly where he’s at. We haven’t necessarily seen a great deal of improvement, but we haven’t seen regression either, so that’s a win as far as we’re concerned.”

The Abletts’ lives changed again last year with the arrival of a second child. Their little girl, Grace was born in November and Levi adores her.

“He’s loving being a big brother and having a constant companion around,” Ms Ablett said.

“Although it’s been the best thing being able to welcome a new family member, it’s been really challenging.

“It also already feels like a completely different parenting experience than when I became a mum for the first time.”

Ms Ablett is an ambassador for the Royal Children’s Hospital (RCH) Good Friday Appeal.

“Levi requires a great deal of care that ultimately stems from the hospital, so we’re always grateful to everyone involved there and how they go about helping children,” she said.

“For the hospital to continue to provide its patients and families with world-class care (it) relies heavily on the generosity of the community.”

Ms Ablett hopes that people will give generously for the Good Friday Appeal. In addition, she has helped set up a forum called the House of Hope, which is a place for parents of special needs children to connect and receive help.

Jordan Ablett with her son Levi. Picture: Supplied

Despite the challenges, Ms Ablett feels Levi’s illness has changed her way of approaching life.

“As hard as it is, your child will unlock things inside you, things that matter and that are of value. They will help you see the world with different lenses,” she said.

“You won’t live like you used to, but you won’t want to either.”

Donate to the Good Friday Appeal at www.goodfridayappeal.com.au