Diagnosed with a liver disease at two-weeks of age, Stephania Papadakis spent the first two years of her life in and out of hospital. As a two-year old she couldn’t walk from the swelling of her damaged liver, she couldn’t run or play, she couldn’t sleep more than two hours because of the pain and when she was teething, she couldn’t take panadol.

And even though she may not remember the excruciating pain she was in, her family do. They watched as their child and sibling wasted away before their eyes. It was an organ donor who saved her life. Stephania’s mother Valasia remembers this time too well, a time filled with so much sorrow and pain, she never lost hope. Every night, her and her husband would go to bed crying, and pray to God.

“We didn’t want anyone to die but if someone was going to die I would pray they would please donate their liver. If only her organ donor could see how they replaced her pain and tears with joy and laughter.” Valasia is quick to call organ donors “modern day heroes.”

And Stephania, who may be too young to remember the operation that saved her life, will never forget. Each Sunday at church, little Stephania lights a candle for her organ donor and their family. In a country where we are the world leaders for successful transplant outcomes, it’s a sad state to report that Australia has the lowest donation rates in the developed world.

As of February 2011, there were 1633 Australians waiting on the donor list, waiting for their own miracle, and if they don’t receive a kidney, liver, heart, or lungs, most of them will die. In response to this, the Federal and State Governments have implemented a national reform package ‘A World’s Best Practice Approach to Organ and Tissue Donation for Transplantation.’ The reform is about identifying potential donors in the hospital system.

The government has funded 160 doctors and nurses to work specifically on organ and tissue donation and educate hospital staff and the public on what it’s like to be a donor.

Dr Nick Kokotsis, Maroondah Hospital, Eastern Health, Hospital and Medical Director, Organ and Tissue Donation is one of those doctors.

“This initiative is so we can educate doctors, nurses and public into what it involves to be an organ donor. Also [doctors and nurses] are trained to communicate with the families and tell them what it involves and offer them the option of donating.” Most of the doctors and nurses of this reform are based in intensive care as that’s where most of their donors would come from. He says that it’s their job, should their loved ones be facing death or brain damage, to discuss organ donation. A very sensitive issue, these doctors are trained to respect the family and the patient foremost.

“In the past, we’ve had families who have said no and they’ve come back by themselves and said they feel sad for not volunteering because it really is part of the grieving process. A lot of families feel that by volunteering organ donation of their relative, it’s like their relative carries on living in some way because their hearts are still beating, their lungs are still breathing, or their kidneys are still working. So out of disaster, something positive comes out.”

Stephania is living proof of this. Out of one person’s death, seven people got a second chance at life that day.

“My daughter can now walk, talk and run. And now she has the biggest smile from ear to ear and she’s growing! Nobody would know now that she was ever fighting for her life,” Valasia says.

Dr Kokotsis told Neos Kosmos that as whole, Australians are very supportive of organ donation, but when it comes to the actual event – should a loved one die, or is about to die – he says there is a gap there that they are trying to fill. And some of this has to do with myths associated with organ donation, add to that, cultural myths from being Greek.

“Tha paroun ta matia ke then boris na this ton Theo otan pethanis,” I have clear memories of being told as a child. People in the Greek community tend to hide behind religion and say that the Greek Orthodox religion doesn’t support organ donation.

“It was very important the church supported me,” says Valasia matter-of-factly. “Can you imagine your daughter was dying, and you’ve been Greek Orthodox all your life and then if they were to turn their back on you?” asks Valasia. That, they didn’t. Valasia and her family had the full support of their church every step of the way, and that helped the Papadakis family through this emotional time.

“As Greeks we hate to talk about death but it’s part of life,” says Valasia, as she emphasis the importance of talking about organ donation. She says it’s paramount that we speak with our relatives and express our desire to become organ donors. If you do choose, it’s not enough being a registered donor, you need to make sure your next of kin understands that’s what you want because should the unthinkable happen, they have the final say.

“The most important thing is for people to talk about it and know what their loved ones would wish, and communicate to each other without the taboo. I know culturally Greeks don’t talk about death but it doesn’t mean you are going to die because of talking about organ donation,” explains Dr Kokotsis. Myths associated with organ donation, such as doctors hacking into bodies to retrieve organs, or doctors taking organs before a patient is dead, or worst still selling them on the black market, “couldn’t be further from the truth” says Dr Kokotis.

“The great priority and of highest importance is treating the organ donor, and their family, with the utmost respect. And we emphasise that more so than anything else. The way the donor is covered, the way the organs are retrieved, the way the wounds are dressed, the way they’re sutured – there is a degree of urgency depending on the situation, but the main priority is always the respecting the patient first and then the organ afterwards.”

In 2010, 309 organ donors gave 931 Australians a new chance at life. Valasia said the whole time Stephania was sick, all she wanted was a miracle.

“I remember after the transplant when the doctor came over with a smile on his face, I knew then she was going to be alright. And all I wanted to do was kiss his hand and he wouldn’t let me. I said to him ‘how can I thank you?” and he said to me, “thank the one above”.”