Diagnostics and considering autoimmune causes

When Michelle Burgess’ young son Leo became unwell while their family was on holiday in Tasmania, it initially seemed like a virus — something that would pass with rest and time. But within days, Leo lost the ability to move his body, was transferred between hospitals across two states, and was eventually placed into an induced coma while doctors tried to understand what was happening.

Leo was later diagnosed with GFAP astrocytopathy — an extremely rare autoimmune neurological condition that causes inflammation in the brain and spinal cord. What followed was months in hospital, intensive treatment, and the beginning of a recovery that is still ongoing.

In this deeply personal conversation, Michelle takes Kate Langbroek inside the terrifying early days of Leo’s illness — from the moment she realised something was wrong, to the long weeks spent sitting beside his hospital bed in intensive care, unsure whether he would survive. She shares what it means to advocate for your child when there are no clear answers, how she coped with fear and exhaustion, and the extraordinary resilience Leo showed as he slowly began to recover.

It’s an experience Kate understands in a profoundly personal way. When her eldest son was a child, he was diagnosed with leukaemia — an illness he survived — and she recognises the unique fear that comes when a parent is forced to watch their child fight for their life.

This episode is about motherhood, uncertainty, and the kind of love that refuses to give up — even when the future is impossible to imagine.

Michelle and Leo are sharing their story in support of the Starlight Super Swim which aims to raise $4.3 million to bring happiness to more than 110,000 sick kids in hospital. You can donate via superswim.au/NoFilter

If you find yourself needing to talk to someone after listening to this episode please call Lifeline on 13 11 14.

CREDITS:

Guest: Michelle Burgess

Host: Kate Langbroek

Group Executive Producer: Naima Brown

Executive Producer: Bree Player

Audio Producer: Jacob Round

Video Producer: Josh Green

Mamamia acknowledges the Traditional Owners of the Land we have recorded this podcast on, the Gadigal people of the Eora Nation. We pay our respects to their Elders past and present, and extend that respect to all Aboriginal and Torres Strait Islander cultures.

Become a Mamamia subscriber: https://www.mamamia.com.au/subscribe

See omnystudio.com/listener for privacy information.