Remy was waiting for a heart transplant

He was only 12 days into this world, but baby Remy wasn’t doing as well as he should have been. A visit to the Emergency Department in Canberra showed something wasn’t right with Remy’s heart.  

Like any new parents, Remy’s mum Melissa and dad Joseph hadn’t anticipated any health issues with their first-born.  

However, Remy was born with a genetic heart condition. This required him to spend much of his life in hospitals across Canberra, Sydney, and finally Melbourne, where he was put on the waitlist for a heart transplant.  

Remy was a bright, smiling and loving little baby. With his parents by his side, Remy’s adoring eyes lit up when people walked into his hospital room – nurses, doctors, and especially his music therapist, Jack. 

Despite enduring 3 open-heart surgeries in just one week and later having a BiVAD implanted – a medical device that supports the heart while waiting for a transplant – Remy continued to smile.   

‘His eyes took in the world in a way that felt beyond his years,’ says Joseph. ‘But he also had many hard days – times when he was uncomfortable, unwell, and struggling. Every day was about survival, about being there for him, about hoping for a future outside those walls. He endured so much just to be here with us, fighting for the chance to get a transplant so we could finally take him home.’ 

Tragically, Remy suffered 3 strokes before a donor heart could arrive. Remy died peacefully in October 2024 aged only 10 and a half months.  

Melissa and Joseph saw how hard life was – not just for Remy, but for all the babies and children waiting for a transplant.  

‘We would go back to that hospital in a heartbeat just to be with him again, and while our story didn’t end the way we wished, we are forever grateful to those who choose to donate. Because that ‘yes’ means another child gets the chance that Remy never did,’ says Joseph. 

Melissa and Joseph hold onto precious memories of their beautiful Remy.  

Music and books were amongst his favourite bedside activities. ‘We’d sing and dance when we bathed him and he would kick his little feet and hands,’ says Melissa.  

He loved being read stories, with ‘The Very Cranky Bear’, ‘Pig the Pug’, and ‘Guess How Much I Love You’ being some of his favourites. 

‘He was such a bright boy; he was a real beacon. He was so curious and inquisitive and there was a real thoughtfulness in his eyes,’ says Melissa. 

‘Our journey was that we didn’t quite make it to a transplant. If we had, he would have been a kind and considerate person. He would have been a wonderful person, had that been realised.’