"She's an inspiration," said her mother, Michelle Wood. "Most people would kill for her attitude to life. She loves to laugh at her sisters when they do something silly."

Mrs Wood spoke about her family's experience to highlight HeartKids Awareness Month.

Avelynn was born with a congenital heart defect and spent 18 days in intensive care in the Royal Childrens' Hospital. During this time, she suffered multiple heart attacks and a stroke, which have limited her capacity to speak and learn.

Mrs Wood said she knew there was something wrong during pregnancy and it was confirmed after 19 weeks.

"Finding out she had a problem was an absolute shock. You go through a range of emotions - thinking it's your fault.

"Even worse was her two sisters [Alya, now 15, and Kara, now 12,] asking, 'What's wrong with our baby?"'

Mrs Wood and her husband, Peter, who is on a security detail in Iraq, strive to make Avelynn's and her sisters' lives as normal as possible despite the health concerns.

"We don't know how long she's going to be here," Mrs Wood said. "If she has a short life, it's going to be a good one."

The Woods take advantage of monthly breakfast meetings at the Royal Children's Hospital.

The meetings are organised by Heartkids Victoria, a support group for families of children with heart disease which aims to raise awareness of the single biggest killer of young children, heart disease.

A spokeswoman for the organisation said parents should get their baby's heart checked during pregnancy.

"Early detection can save a baby's life as six babies a day are born with heart disease."

Michelle and Peter Woods are planning a charity bike ride from Melbourne to Sydney in September to help fund research into incurable childhood heart disease.

They will drop into schools on the way to help raise awareness of HeartKids and heart disease.

To support Michelle and Peter Wood's charity ride contact the Yarra Ranges Journal on 87275200 or click here to visit www.pulmonary-hypertension-heart- kids.com