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Coen’s Story

Coen’s Story

One of Australia’s largest children’s health charities, Sydney Children’s Hospitals Foundation (SCHF) is hoping to raise $20 million for sick kids this tax time.

Funds raised through SCHF’s Sydney Sick Kids Appeal will go towards giving all sick kids the childhood they deserve – one where they get to be a kid first and a patient second.

This includes children like Coen, diagnosed with Gabriele-de Vries syndrome at just one-year-old. The ultra-rare neurodevelopmental disorder affects less than one in a million children, causing developmental delays, intellectual disabilities, and a wide range of functional issues.

Coen’s syndrome is so rare doctors told Coen’s mum, Hayley, they couldn’t predict what symptoms would arise in her son.

“At that point in time, he was physically behind… finding out his diagnosis included some intellectual delays – that was heartbreaking,” says Haley.

Coen is now under the care of a highly dedicated and specialised care team at Sydney Children’s Hospitals Network, who work tirelessly to provide the support and care that he and his family need.

“At one point we had 13 specialists, as well as five allied health professionals caring for Coen,” says Hayley. “I don’t even want to think about where Coen would be without the care he’s received. He definitely wouldn’t be where he is today,” says Hayley.

Hayley is incredibly grateful for the extraordinary care that Coen has received and the vital difference it has made in his life.

“Just look at our story and how much support we need for Coen. If anyone can give any little amount, it all adds up and it all helps,” says Haley.

Support Sydney Children’s Hospitals Foundation and kids like Coen this tax time by making a tax-deductible donation at

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