For the first two years of her life, Stephania Papadakis wasn’t allowed to be further than two hours drive from Sydney’s Westmead Children’s Hospital at any time, in case she needed urgent treatment.

Stephania received the gift of life, and it had no card, it didn’t come with bows or pretty pink paper, but it has changed her life.

“This little girl has had more blood tests, more visits to the operating theatre than visits to the park,” her mother, Valasia Papadakis, says.

At six weeks old, Stephania was diagnosed with a rare liver disease, Biliary Atresia, which meant the bile duct between her liver and small intestine was blocked or absent.

There is no known cure; the only treatment is a liver transplant. Her family waited on tenterhooks for 20 weeks for an organ donor to finally appear.

“Every step Stephania takes is in honour of her organ donor,” Ms Papadakis says.

On the one year anniversary of the successful transplant, Ms Papadakis calls on the Greek and Australian communities to register for organ donation.

“You don’t need your organs in heaven,” she said.

“And heaven knows we need them here.”

The most recent count of the Australian Organ Donor Registry, on 30 September 2010, shows 1 423 722 Australians are legally registered to donate their organs when they die.

For a country with a population of over 20 million, this makes Australia one of the world’s worst performers in terms of organ donation rates.

National Medical Director of the Organ and Tissue Authority, Dr Gerry O’Callaghan said, at any one time, there are 1700 people on official transplant waiting lists in Australia.

“In Australia, family consent is always sought for donation to proceed,” Dr O’Callaghan said last month.

“Australia’s current family consent rate is less than 60 per cent largely because many families had not discussed each other’s donation wishes.”

In 2008 the Australian population had 12 donors per million; Spain had the highest donation rates with 34 people in every million, largely due to their “opt-out” system, while in Greece it was 10.5.

This week, Kathimerini reported that a lack of confidence in the public health system means organ donation rates are the lowest in the European Union, with only 0.9 per cent of the population of Greece registered to donate their organs.

Mrs Papadakis says her daughter simply wouldn’t be alive without her organ donor.

“Stephania received the gift of life,” she said.

“And it had no card, it didn’t come with bows or pretty pink paper, but it has changed her life.”

To sign up for the Australian Organ Donor Registry, Australians are urged to discuss it with their family and visit www.donatelife.gov.au

GREEK PARTY TO CURE LIVER DISEASE

As Stephania Papadakis celebrates one year since her successful liver transplant, her family and friends are organising a fundraiser for the hospital that has become their second home.

On Sunday, her mother hosted 280 people for a gala dinner dance to raise funds to research Biliary Atresia, the rare liver disease that threatened her daughter’s life.

Valasia Papadakis said she’s hoping to raise more than $30 000 at the dinner dance, where there will be bouzouki playing, plate-smashing

and dancing.

She said, for $110 a head, with a four-course meal, the night will be a real Greek party.

“Because no matter how much sorrow we Greeks go through, we still know how to have a good time,” she said.