Abletts’ believe knowledge is power in Levi’s health fight

Jordan Ablett says hearing son Levi’s health diagnosis was a hard but important step in facing up to his condition.

Jordan Ablett says having clarity on the condition facing her son Levi has been the most important step as parents for her and husband Gary.

The Abletts revealed their two year-old was diagnosed with a rare degenerative illness last year and in March Jordan said it has a very short life expectancy.

This week she created a new forum close to her heart called House of Hope, for parents of special needs children to connect.

“From a medical point of view, the best advice we’ve been given is that ‘knowledge is power’,’’ Jordan said.

Levi Ablett is battling a degenerative health condition.

“It breaks my heart when I think about all of the parents who are still seeking answers for their children, knowing that there is a problem going unaddressed.

“You can’t offer the best care and treatment for a child without clarity on the condition you’re facing. Despite how hard it was to hear of Levi’s diagnosis, it was the most important step for us to be able to move forward in the right direction.”

Jordan says her late mother Trudy helped her conceive the idea for HoH at the start of lockdown last year. Trudy Papalia passed away after a battle with lung cancer last August.

“The concept came during Victoria’s initial lockdown in 2020,’’ she said.

“I had just been given the news about Levi’s diagnosis, and we were caring for mum at home under palliative care. I remember feeling really thankful for my friendships and my family, that I had this community around me that I knew I could call on no matter what, and my heart went out to people who didn’t have that.

Jordan said Levi is showing great courage.

“I remember speaking with mum about it, and she helped me to come up with the name and the purpose, and really encouraged me to let it be a place of realness, support and community. My mum really valued authenticity, and she cared sacrificially.

“Initially, I created House of Hope to give people access to my friends and family; to hear their wisdom, and how they were dealing with the pandemic, and their personal circumstances.

“I wanted people to find hope and encouragement during what was a really devastating year for so many people in many different ways. As mum deteriorated, I didn’t have the energy or time to invest in House of Hope, and decided to press pause on it.

“It’s always been something that’s been bubbling under the surface, that I’ve wanted to go back to, but it has taken until now to give it the time that it needed.

“The focus now is specifically on parents of children with additional needs.”

Ablett said it has been a constant balance reaching out for support while juggling the family’s privacy with a public profile through Gary being a former AFL superstar.

She wants HoH to be “a place of great support and connection, for relationships and friendships to be established, to open the communication channels, and to celebrate these parents who are superheroes.”

She said Levi always makes his parents proud.

“Levi is doing really well at the moment. We’ve been going for plenty of walks along the beach in the pram during lockdown, which he loves.

“He is still just as in love with the Wiggles as he’s ever been, which after a number of repeats, becomes the soundtrack of our insanity during lockdown.

“We’re really proud of him as he continues to show great courage and bravery as he faces the challenges unique to him.

Instagram: @houseofhopeja