Healthier kids, brighter futures

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1 in 20 children is born with a birth defect or genetic disease, and over 600 children are diagnosed with cancer every year.

They are more than numbers, they are people. Here are a few of their stories...


Amy is the "1 in every 10,000" born with the rare neurodevelopmental disorder William’s Syndrome.


At 16 months of age, Bella was officially diagnosed with DiGeorge syndrome, a disorder that results in poor development of several bodily systems.


Carole lost her mum, son and recently her sister due to a genetic disease that she too suffers from. It’s a battle which has crossed generations and one which Carole continues to fight.


When Ella was just 3 years old doctors discovered a large, life-threatening tumor in her liver so rare that it challenged doctors across the country.


Born at just 25 1/2 weeks and weighing a mere 597 grams, she was given a 5 percent chance of survival...


Kathryn and Daniel Pym, like any expecting parents, dreamt of a perfectly healthy start to life for their first child. But they quickly had to come to terms with a very different reality.


Fred was only 7 months old when he began aggressive chemotherapy treatments for an atypical tumour that no one had seen before...

Henry and Rosalie

Henry and Rosalie are brother and sister with a very rare disorder known as LCHAD. Every child with LCHAD is affected differently, some with few issues and some with many.


Diagnosed with 2q37 deletion and 11q24.3 duplication, Joel Short is determined not to let genetic disease stand in the way of big dreams.


Livia’s family first started to notice that something was wrong when Livia was only a few weeks old. Scans showed Livia’s brain was ‘underdeveloped’, but it didn’t explain the cause...


Madeline was born with a genetic disease: OTC deficiency. She went through 11 months of intense treatment for the urea cycle defect that was causing her liver to fail, and before her first birthday the doctors said she needed a liver transplant...


Riley can have 46 absence seizures in 4 hours, and that is just a normal day. Social life is affected, school is affected, the whole family is affected. And he’s not getting better...