Ethan Roy, of Caringbah, had already been through two life-saving heart surgeries before he was six months old.
To improve his quality of life, his parents Michelle and Daniel are raising money for vital medical equipment that will help children including Ethan.
Eight children are born with congenital heart disease in Australia every day.
It is the leading cause of death in children under the age of one.
The condition is known to occur when the heart or blood vessels near the vital organ do not develop properly.
Mrs Roy discovered Ethan had heart problems during her 20-week scan.
“As hard it was finding out it was easier knowing then than it would be knowing after the birth that something was wrong,” she said.
“I have no genetic background of heart disease, and I wasn’t unwell in the early stages of pregnancy.
“But we were lucky compared to some kids who go home with gastric tubes.”
The family is supporting the Heart Centre for Children at The Children’s Hospital at Westmead Children’s Hospital by asking the community including businesses to dig deep and donate to a worthy cause.
The goal of the Mending Small Hearts charity event is to raise money towards new equipment – two ECG machines and a cardiac ultrasound machine.
The hospital treats up to 3500 children with congenital heart disease each year.
Mrs Roy says despite the ongoing challenges, Ethan is a happy baby.
“He’s easygoing, and takes everything in his stride,” she said.
“He has an amazing team of carers, so we want to give back to say thanks for everybody who has effectively saved his life.”
The gala dinner is on July 16 at Doltone House, Sylvania Waters.
Contributions can be made through monetary donations, vouchers or goods for a silent auction and raffle, or table sponsorship.
Details: Mending Small Hearts on Facebook.
