Former NRL star Mark Riddell opens up on his daughter Ava’s rare condition

Former NRL star Mark Riddell is one of the game’s true characters, but behind the scenes he and his family have had to come to terms with an extremely rare condition impacting their six-year-old daughter Ava.

Mark and Karli Riddell pictured with their daughter Ava, 6, and sons Will (left) and Harry (right) at Shellharbour today. Ava suffers from the rare condition know as Ogden Syndrome. Picture: Sam Ruttyn

Meet the mystery girl.

The little blonde angel who had doctors scratching their heads from the moment she was born.

They knew Ava Riddell was having a tougher time than most bubs, a partial collapsed lung and continually battling pneumonia, trouble feeding which led to her needing to be tube fed.

She also had trouble breathing and sleeping and was sent home from hospital on oxygen.

But they couldn’t quite pinpoint why.

She spent the first four months of her life in Randwick Children’s Hospital with her mum Karli while her dad, former NRL star Mark “Piggy” Riddell, looked after her two older brothers.

Ava Riddell suffers from the rare condition known as Ogden Syndrome, Picture: Sam Ruttyn

Ava is one of only 120 cases known worldwide. Picture: Sam Ruttyn

“The doctors all called her the mystery baby, they just labelled it global development delay as she got older. They didn’t really have any answers for us,” Mr Riddell exclusively told the Sunday Telegraph.

As Ava’s little body grew she hit the milestones later than most – late to crawl, late to walk.

And by five, when she set off to big school she still couldn’t find the words to tell her parents what she wanted in her sandwich.

Today though the colourful little six-year-old, full of energy and sass, has found her own way to communicate to her parents who have finally found answers as to why her journey through life will be different than most.

For the Riddell family, Ava’s diagnosis was a difficult, but also a relief. Picture: Sam Ruttyn

Ava is one of a handful of children in Australia diagnosed with the extremely rare genetic chromosomal condition Ogden Syndrome.

It’s a simple chromosome error where one letter changes from a T to C. It affects one in 11 million people. There are only 120 known cases worldwide.

The symptoms include intellectual disability, developmental delay, non verbal, an aged appearance, slow growth, feeding and swallowing difficulties, autism spectrum disorder and cardiac anomalies.

For Ava’s parents the diagnosis was difficult — and a relief.

Mark Riddell says Ava is reaching her own milesltones and lovers interacting with people and her big brothers Will and Harry. Picture: Sam Ruttyn

“I couldn’t talk about it for a couple of months, I get too emotional” Mr Riddell said of learning the news early this year.

“Then we started looking into it, and we pretty quickly realised how rare it was. If you google it you won’t find much,” he said.

“The other thing is we volunteered for genetic testing. It’s funded now but it was very expensive so there could be a lot of families out there who don’t even know their children may have it.”

Having a diagnosis means the Riddells know what to look out for – and what routine check ups are vital.

Mark Riddell in action for the Eels during his NRL career. Picture: Supplied

“It meant we knew what some of the other symptoms could be and we could get her cleared of those,” Mrs Riddell said.

“Her heart tests are all clear and in terms of longevity she can live a long and healthy life which is great.”

Ava meanwhile is making her own milestones. She can say a few words, is learning sign language and has a communication device coming to help.

“She loves the Wiggles and she really loves interacting with people,” her mum said.

“She loves everything about the water. She finds it really calming, which is common in people with Ogden Syndrome.”

Her dad adds: “She loves people, loves interacting with people and she loves her two older brothers. They need to be very patient and they are great with her.”

The Riddells are sharing their story to raise awareness in the hope that other people affected will find the support they have found through Facebook groups and most importantly the Ogden CARES Organisation in the US.

They have started fundraising for the organisation under Team Ava Riddell to further the research about Ogden syndrome and eventually try to find a cure through gene therapy.

HOW YOU CAN HELP

Ogden Syndrome Day worldwide is October 10.

Between October 5 and 15 run, walk, ride, or roll ten laps around the track of your choice.

At the start, the finish, and/or as many times as you want along the way, post your participation pics to social media with #ogdensyndromewalknroll23.

Donations for Ava Riddell are welcomed

Mr Riddell’s local gym, The Yard Gym Shellharbour, is holding a fundraiser for little Ava on Saturday. Piggy would love all of his football fans, friends and anyone willing to support a cause to find out more about such a rare disorder to come and show their support.

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