Real life

William's Story

“Our introduction to the world of heart disease was sudden, unexpected and truly terrifying.

It was August 2015 and our little boy, William, had been unwell with suspected gastro. But he wasn’t recovering, so we took him to a GP because he had started vomiting. We were told to take him home and give him panadol because the doctor thought he had a virus.

Six hours later we were in emergency. William was actually in end stage heart failure with a diagnosis of Dilated Cardiomyopathy.

Everything was surreal. The next day we were told William was in a critical state and that he’d be put on an ECMO, or short term life support, and then most likely be given a VAD until a heart transplant became our only option.

We remember it was midnight and we were sitting with two cardiologists being told the news... we just sat there thinking ‘how did this happen? How did we not know?’

Now we understand the grunting breaths, the puffiness, the excessive sweating, the dry cough... they were all signs of heart failure. We couldn't believe it! Just that morning, William had been diving off the couch like any other crazy, unstoppable 17 month old baby.

We spent just over six months in the Royal Children’s Hospital in Melbourne which became our "new normal" and our home.

We spent four and a half months waiting for a heart transplant and another two and a half months recovering after the transplant. It was incredibly tough on our family. William was separated from his older brother and sister for long periods of time because we couldn't leave the hospital as William was hooked up to a life support machine that weighed 300kgs! 

Our life now is complicated and full of anxieties. But William is alive. And we know each day is a blessing. We still can't believe how quickly our life changed. We are so grateful to the incredible doctors and surgeons we have, and how modern medicine has given our son a future,” - Julia, William's mum.

You can help kids like William by supporting vital discoveries at the Victor Chang Cardiac Research Institute.

Learn more about cardiomyopathy