Our Stories

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Tom McGoram grew up in New Zealand and emigrated to Australia in 1995. He was diagnosed with Fabry disease in 2011 and is on treatment under Australia’s Life Saving...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Jason Williams, 49, is an IT manager who lives on Queensland’s Gold Coast. He was diagnosed with Fabry in 2017 after a routine check-up with his GP. “I’m always...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Mark de Wolf, 53, runs a gardening business and works as a bush regenerator (nature conservation). He was diagnosed with rare disease, Fabry, in 1984. “I know we are...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Tanya Tindall is carer to husband Brad, diagnosed with Fabry in 2016. Her daughter Chloe, now 18, also inherited Fabry “You have to advocate for your own health...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Associate Professor Carolyn Ellaway is a Clinical Geneticist in Metabolic Genetics at the Children’s Hospital Westmead in Sydney. She treats the majority of children...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Alec Campbell is a Year 6 school student in rural Victoria. He was diagnosed with Fabry disease at birth. “I talk to my mum about Fabry, about what causes it. She...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Leanne Clark is a lifelong carer to her husband Ross and daughter, Ashleigh, both living with the rare disease, Fabry. “Sometimes you just want to feel life is normal...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Julie Fitzgerald lives on the Mornington Peninsula in Victoria. She was diagnosed with Fabry disease at age eight.  Julie is the author of ‘Faber the Dragon’, a...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Dianne Wallyn was diagnosed with Fabry in 2009. She volunteers her time to supporting Fabry Australia as a committee member. “It helped me take the fear out of having...

Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’ Professor Mark Thomas is a renal specialist and Fabry doctor at Royal Perth Hospital. “I’ve seen enormous leaps in the 25 years I’ve been treating Fabry patients. For...