EVERYONE who meets William Arrowsmith is captivated by his infectious smile, the cute questions and his undying love of trains.

Looking at the smiling four-year-old you would not believe the challenges he has already faced in his short life.

But as he ran up the hall to show me another one of his favourite trains it was hard to believe he has been so sick.

William suffers from a rare and complex heart defect called Pulmonary Atresia, with the complications VSD and MAPCA’s - although sitting in his kitchen you would never know it.

The vessels that supply oxygen to William’s lungs are smaller than they should be and he has and will endure many more procedures in the future to get it right.

Mum Joanne was made aware of his illness while pregnant.

Faced with a decision to terminate the pregnancy or to continue, with the hope that surgery once he was born could fix the problem, Joanne made the decision to “give our child the best chance he could have”.

William went straight into the Intensive Care Unit when he was born but was able to go home a week later.

It was not to be the last time he had visited the hospital.

At just 10 days of age William went into the Royal Children’s Hospital for the first of many procedures to mend his heart.

“While the first one was classed as minor it was a major thing for us, he hadn’t even been home for two weeks,” Joanne said.

When William was one-month-old he underwent his first heart surgery, at 21-months he endured open heart surgery. It’s hard to imagine the feelings of angst the whole family endured during his operations – the feelings of loneliness and “why us”.

That’s where Heart Kids came in. They provided Joanne and her family with support and the knowledge that they weren’t alone.

“They helped to remind me that I wasn’t alone – that other parents were going through the same thing,” she said.

“It was nice to know I had the support of people who had been through it, or were going through it.”

Now Joanne and William work hard to get the Heart Kids message out. Six children in Australia are born with a heart condition every day.

“I like to help where we can with little things like putting newsletters into envelopes or packing stickers,” she said.

“And I like to fundraise where I can - this year we plan to hold a dinner at the Little Chapel in Iona.”

William will need more surgeries as he grows.

His next major operation will be in three years, but for now he’s the happy, smiling train fanatic of the family.