If you ask seven-year-old Vinnie about his condition, he’ll tell you he was born with half a heart and that one day he’ll need a new one.
Vinnie has hypoplastic left heart syndrome (HLHS) and is in severe heart failure. In his short life, he has had three major, open heart surgeries to help stabilise his condition and preserve his heart. But he will need a transplant.
For parents Claire and Ben, keeping up with ‘such a ball of energy’ can be challenging. His condition means he has severe heart failure. But he doesn’t let that stop him.
“Vinnie is full of life,” says Mum Claire. “He’s very strong and knows his own mind. He’s a very big advocate for himself and his heart condition. We follow his lead. It’s not something he’s ever shied away from, he embraces it. It’s made him who he is.”
Vinnie’s parents discovered there was a problem with his heart during Claire’s 20-week scan: “We were told they couldn’t see all the chambers and then we had to wait a week to get an answer. I remember my husband literally carrying me out of the hospital. It was an incredibly lonely time. I think I stayed in bed for that entire week. I was beside myself.