RCH Patient Noah

Toddler a rare marvel

Genetic blip can’t hold back Noah

Nobody will benefit more from the generosity of Victorians to this year’s Good Friday Appeal than adorable Noah Stewart.

The Elmo-loving tot has a genetic condition so rare he was only the fourth child in the world diagnosed with it.

At 10 months, Noah started having “blue episodes” during which his oxygen levels would plunge, said his mum, Kristen Catalano. “It felt like he was dying in my arms,” she said.

Thanks to a team of 15 specialists from the Royal Children’s Hospital, Noah is a happy, cheeky boy. In two years, he has been to hospital 20 times and had another 87 hospital appointments.

“He’s a very smart two-year-old despite his disability,” Ms Catalano said. “When he’s in hospital, when the doctor wants to check him with a stethoscope, Noah will fold himself in half so the doctor can’t get to his chest!”

The Harkness boy has what’s called a microdeletion of chromosome six.

“So they explained it as if you pull a book off a bookshelf called chromosome six, the front page is missing,” Ms Catalano said. “The chromosome’s there … the microdeletion means there’s one molecule, one page missing out of that chromosome.”

Neither Ms Catalano or her partner, Chris Stewart, carries a genetic defect, so Noah’s condition can’t be explained.

RCH consultant pediatrician Romi Rimer said the “many cooks in the kitchen” contributing to Noah’s care, were working to one goal.

“Everyone in Noah’s team cares so much about Noah and his family, we’re all just trying to do our bit to make life a little bit easier and a little bit happier and a little bit healthier,” Associate Professor Rimer said.

The Good Friday Appeal raised a record-breaking $23,368,724, including a whopping $5,261,913 from regional Victoria, up from almost $4.6m last year.

Penny Fowler, chairman of the Good Friday Appeal and The Herald & Weekly Times, said the generosity of Victorians was amazing in light of cost-of-living pressures, and the growth from the regions was particularly astounding.

For the first time, this year $2.5m will be split among six regional pediatric health services – Barwon Health, Bendigo Health, Grampians Health, Goulburn Valley Health, Albury Wodonga Health and Latrobe Regional Health.

In terms of top fundraising towns, Devenish, Dookie and District punched well above its weight, placing third on the regional tally board after Geelong and Ballarat, raising more than $193,000. Other heavy hitters were Corowa Wahgunyah, Albury, Wodonga, Wangaratta, Echuca/Moama, Warrnambool and Traralgon.

In Condah (population 121) in southwest Victoria, the ingenious efforts run out of the town’s pub included a 100km ride by a local who hadn’t been on a bike for 20 years, which earned about $12,500.

And the McEvoy Tavern, in Eldorado, near Wangaratta, billed as the smallest pub in Victoria, raised almost $24,000 with a family fun day, the most it has ever raised.

While the appeal’s tally is set for 2024, Mrs Fowler said the fundraiser would roll on. “We’re always raising money, it’s a year-round appeal, it’s always about giving what you can to make a difference.”

Written by Jen Kelly
Images by David Caird
Published in the Herald Sun 5th April 2024

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