MALLORY and Reece Dehnel are waiting on a phone call that could change the course of their little son's life.
Emerson, aged one, is on the waiting list for a liver transplant after he was born with biliary atresia — a progressive, life-threatening liver disease.
He is one of six children currently on the NSW waiting list for a liver transplant.
The Dehnels have travelled all the way from Western Australia and will remain in Sydney until they receive the call from The Children's Hospital at Westmead to tell them that Emerson has a new liver.
The call could be at any time of the day and the Dehnels must keep their mobile phone within arm's reach so they don't miss the life-saving call from the hospital.
Mr Dehnel said they could remain in Sydney for many months waiting for the organ.
"We don't even bother asking the doctors because they don't know and it would be unfair on us to make the doctors tell us when they think it could be when they don't even know," Mr Dehnel said.
"Today [on Tuesday] it was confirmed that he has cardiac pulmonary syndrome as a result of his liver condition, so now he is developing lung disease which they said makes the transplant more urgent.
"Hopefully, it will be relatively soon."
This week marks DonateLife Week, a national initiative which promotes the importance of family discussion and knowledge of organ donation decisions.
It is a topic not much talked about in NSW, where the number of organ donors remains the lowest in Australia.
Mr Dehnel is urging people to discuss their decision with others.
"If you want to donate an organ people need to know of your decision," he said. The Dehnels' doctor, paediatric hepatologist Michael Stormon agrees.
"Young kids are suffering and in some cases they are dying while waiting for an organ transplant," Dr Stormon said.
"It's about talking to their family and loved ones and making sure they are aware of their wishes."