This October, Raffy and his family will join the HeartKids community at the Sunshine Coast Two Feet & A Heartbeat walk.
Raffy was diagnosed with a heart condition just two days after he was born, requiring urgent surgery at three days old and open-heart surgery three months later.
Raffy’s mum, Laura, shares their family’s journey, the ongoing reality of living with childhood-onset heart disease (CoHD) and the support HeartKids has provided along the way.
Can you tell us about Raffy’s heart journey?
Raffy was diagnosed with critical aortic stenosis on his second day of life and was retrieved to the Queensland Children’s Hospital (QCH).
He underwent a balloon valvuloplasty at three days old, before requiring open-heart surgery for a valve repair at three months old. His condition has been stable since then and we are very grateful for his cardiology team at QCH.
How has HeartKids supported your family?
HeartKids were there to provide support following his unexpected diagnosis and again during his surgery.
We love that he gets to grow up being part of a community of brave kids growing with different hearts.
What do you wish more people understood about childhood heart conditions?
Just because children look well, it doesn’t mean they’re fixed.
Further surgery is a likely for Raffy over the next few years and that’s a scary prospect as his parent, despite how well he seems.
What would you say to another heart family?
These kids are so strong. Surround yourself with others who understand your experience and allow yourself to be supported through the scary days.
To support families like Raffy’s, register to attend your local Two Feet & A Heartbeat walk today.
