Noah Morrison’s mum Chantelle says her son is a typical, “devilish” three-year-old.
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But his cheekiness belies the battle the Bendigo toddler has faced in his short life.
Before he was even born, Noah was diagnosed with congenital diaphragmatic hernia, or a hole in his diaphragm.
The serious condition is as prevalent as cystic fibrosis, affecting one in 2500 babies, of whom about half will die.
Yet CDH is not commonly known, even among medical professionals.
Noah’s experiences have led his mum and dad Josh to establish a fundraising and awareness-raising project called Noah’s Hope.
This Saturday will see its third annual fundraiser, a ‘winter wonderland casino night’ at the All Seasons Bendigo featuring casino games with ‘fun money’, a silent auction, a balloon pop, speakers and other activities.
Mrs Morrison said the money would help volunteer-run organisation CDH Australia support children and families affected by CDH, and potentially also go towards research on the condition.
But for Mrs Morrison, boosting awareness of the condition is just as important, if not more so, than the money.
For Noah, CDH meant his internal organs were displaced towards the left side of his abdomen, while his heart was pushed to the right.
Mrs Morrison said his lungs had held up well as he had grown older and thanks to the efforts of an “incredible” surgeon he had not suffered another hernia, but he had experienced a lot of bowel problems.
At 10 months old he suffered his first major bowel obstruction and underwent surgery, then had another suspected obstruction and was diagnosed with gall stones several months later.
He continued to experience ongoing issues and pain, but last year they became especially bad and he again underwent major surgery to remove part of his bowel and his gall bladder after suffering another bowel obstruction.
Mrs Morrison said pain would continue to be a problem, but on an everyday basis he was doing relatively well.
But the anxiety lingers for parents like the Morrisons, because as Mrs Morrison explains, “things can go wrong at the drop of a hat”.
“You have good days… but you’re on edge all the time,” she said.
Mrs Morrison said the support of CDH Australia was essential for families, giving them links to people who understood their trials and could offer a sympathetic ear or advice.
“It’s an incredible group, an incredible family to be part of,” she said.
Tickets to this weekend’s Noah’s Hope fundraiser can be purchased until 12pm Thursday, July 27, but goods and cash donations will be accepted at any time.
For more information, visit the Noah’s Hope website.
Mrs Morrison said businesses that wanted to support CDH Australia in a larger way could find out more at the organisation’s website.