“Austin’s resilience inspires us every day.”

Pictured above: Austin with Samantha and Trent McCormack

A Warner mum has shared the story of her brave five-year-old son to help support those Australians living with a rare disease.

It comes on the eve of Rare Disease Day (on Friday February 28), which highlights the challenges faced by more than two million Aussies.

The Immune Deficiencies Foundation of Australia (IDFA) says many struggle for recognition, diagnosis and access to treatment.

Austin McCormack, from Warner, was recently diagnosed with pan-hypogammaglobulinemia, a primary immunodeficiency.

Despite facing monthly IVIg (intravenous immunoglobulin) infusions and ongoing health challenges, his adventurous spirit shines through.

“He knows the routine now - he’s brave at every appointment, even when it gets tough,” mum Samantha says. 

“Austin’s resilience inspires us every day.”

Samantha’s journey has been one of persistence with it taking two years before Austin received a proper diagnosis.

The turning point was being referred to a specialist at the Women’s and Children’s Hospital in Adelaide, confirming what Samantha had suspected all along.

“Trust your instincts,” she advises other parents.

“Doctors are experts, but no one knows your child better than you do. Make sure their voice is heard.”

Rare Disease Day is a global movement to raising awareness of more than 6000 known rare diseases, many of which are life-threatening and often invisible.

With 70 per cent of genetic rare diseases starting in childhood, IDFA CEO Carolyn Dews says there is an urgent need for awareness and support.

“Austin’s story is a powerful reminder of why we must continue advocating for those with rare diseases,” she says.

“No one should feel alone on their journey.”

For Rare Disease Day, IDFA has launched a Colour a Zebra Competition, for primary school children to show their creativity by colouring in a zebra.

By participating, children will learn about the importance of rare diseases while also going in the draw to win a family trip to a zoo.

For further information visit www.idfa.org.au/advocacy/rare-disease-day