Diagnosed with tetralogy of Fallot – a congenital heart disease consisting of four defects – baby Ethan underwent open heart surgery to save his young life.

Now, more than two years on, the little Tarro boy is thriving and his parents are willing to do all they can to raise awareness for children living with a heart condition.

“Ethan was diagnosed with the condition four days after he was born and it was very daunting news to say the least,” Mr Johnson said.

“Then when he was five months old he had heart surgery and it was the worst day of my life so far. We paced the floor in a daze for four hours – it was petrifying.”

And while Ethan, now two years and nine months, is doing well there will be further surgeries in his future.

“I have to admit I didn’t enjoy the first few months of being a mother because I was very stressed and it was all so scary,” Mrs Johnson said.

“But now I love being Ethan’s mum and I think we just try and take each day at a time.”

And while Mr Johnson tries to follow his wife’s sentiments, he worries about this son’s future.

“I can’t bring myself to look at the photos of Ethan after his operation but at the end of the day we are going well,” he said.

Mrs Johnson is now the Hunter representative for HeartKids – a support group for families of children with congenital or acquired heart disease.

She has organised a fund-raiser at Blackbutt Reserve, New Lambton, on Sunday.

The event, starting at 10am, will include a visit from Newcastle Knights rugby league players.