The words ‘heart disease’ are usually associated with old age, or with wrong lifestyle choices – bad diet, lack of exercise and stress. The last thing that comes to mind is the image of a child. Yet one in every 100 children is born with heart disease, says Norm Hutton, CEO of HeartKids.

“Eight babies a day are born with child heart disease (CHD),” he says. “It is the highest cause of infant death [and] the statistics are far greater than the awareness.”

HeartKids has been committed to changing people’s perception of heart disease since 1990, when nine parents came together to support each other when battling their children’s CHD; in the early days there was little help for such families.

“They had no real provision, next to no kind of support, and were facing an extreme lack of information,” says Mr Hutton, who has been at the organisation’s helm for the last two years.

“They managed to build a support network that allowed them to gain confidence and tackle the issue collectively.”

Margaret Agetzis was one of those nine parents. Her daughter – now 28 years old – was a newborn when she was first admitted to Melbourne’s Royal Childrens Hospital. Four years later she had open heart surgery.

Mrs Agetzis says that her connection to other parents helped her cope with the problem her family was facing – speaking with cardiologists, working with the nurses, getting information about heart conditions.

“I was not alone in this,” she says. “There were other families affected by the same problem and this eased the situation we were facing.”

HeartKids was born out of this experience. The charity managed to build a strong support network for parents and children, sharing information, printing pamphlets, issuing newsletters, holding fundraisers. “We held regular morning teas that helped buy equipment for the hospitals: scales, chairs, anything,” says Mrs Agetzis, who has seen the charity transform from the effort of a group of parents to an incorporated organisation, which now operates across Victoria.

“We have an amazing network of hard-working volunteers,” says Norm Hutton, “as well as several employees, based in the RCH and at Monash Heart, at Clayton.

“Nowadays, we are not only able to provide hands-on service in case of emergency, provide care, support and information where needed, but we actually invest in research regarding the cause, as well as the cure of CHD.

“Our main goal remains the same – to ensure that these children’s parents have all the support they need, from the initial diagnosis to treatment and beyond.”

HeartKids has almost 2,000 members in Victoria, most of them parents, but also former ‘heart children’ who have grown and provide their support, sharing their experience. Their involvement is crucial, says the Heartkids CEO, particularly as they enter adolescence, which presents an additional challenge.

“Our volunteers talk to them, prepare them, [and] explain to them what they can and what they can’t do with their body.

“People who have themselves experience this roller-coaster ride can see things from a teen’s perspective and help them overcome the challenges and take on their responsibilities.”

As a self-funded organisation with no government support, HeartKids relies solely on donations, fundraising activities, and corporate support.

Tomorrow the charity is taking part in People’s Choice PJs Run, a fundraising race.

For more information and ways to participate, go to www.runmelbourne.com.au