Now 19 months old, Allie was diagnosed with Biliary Atresia days after she was born. The condition, for which there is no known cause, eats away at the bile ducts in the liver, causing cirrhosis and eventually total liver failure.

She was flown to the Children’s Hospital at Westmead to be assessed and the severity of her condition quickly sunk in for her mother Claire Matthews.

“We were told by the surgeons that she’d maybe last two years if we were lucky, but probably only one,” Mrs Matthews told The Chronicle. “We knew we had to get the transplant.”

Allie was on the waiting list for a new liver for seven months because of a shortage of organ donations early last year. Mrs Matthews said because organ donations were scarce the waiting list got longer and patients were reassessed frequently to determine priority.

“It becomes a really stressful and horrendous experience,” she said.

Her rare condition meant Allie couldn’t gain weight and she became prone to infection.

“In the first year of her life she only put on 2.8 kilograms,” Mrs Matthews said. “They don’t like to transplant babies until they’re 6 kilos, and she never got to 6 kilos.”

From the day she was born Allie spent most of her time in hospitals and even when she went home she had to be fed almost 24 hours a day through a nasogastric tube to maintain her weight. Her diseased liver caused her abdomen to fill with fluid and as a result she couldn’t move freely.

“It becomes this sort of really weird routine you get into that’s not at all normal, because you’ve got a baby but they’re not doing any of the normal baby things,” Mrs Matthews said.

The toddler received a life-saving liver transplant about six months ago, and afterwards doctors told Mrs Matthews without the organ donation Allie wouldn’t have lasted more than six weeks longer.

At any time about 1600 Australians are on organ transplant waiting lists, but just one organ and tissue donor can save the lives of more than 10 people.

“In Australia we have one of the highest transplant survival rates in the world, which is incredible, but one of the lowest rates of donations in the Western world,” Mrs Matthews said.

Her family’s experience with organ donation has inspired them to take part in the Gift of Life’s DonateLife Walk 2013. They are hoping to help raise awareness about the need for organ donors and how important it is to share your wishes with family members.

Mrs Matthews said many people don’t understand the family of every potential donor is always asked to confirm the donation wishes of their loved one before the organ and tissue donation can proceed, regardless of whether they are a registered donor or not.

Allie has made remarkable progress since receiving her transplant; although she regularly travels to the Children’s Hospital at Westmead to have her condition monitored and will need to take immune suppression drugs for the rest of her life.

“She’s always been really happy and I guess that’s been something that’s kept us going,” Mrs Matthews said. “We could never thank the donor enough for what they’ve actually done.”

Registration is still open for Gift of Life’s DonateLife Walk 2013 which will be held at Regatta Point on Wednesday, February 27.