TARA Anderson has barely left her son's hospital room in four months, while she waits with him -- his tiny yellow fingers wrapped around one of hers -- for his second chance at life.
She has watched the nightly news differently ever since eight-month-old Xander Redman was put on the transplant list for a new a liver.
With fiance Matthew Redman, the young couple left their home and family in Burnie to move into the Melbourne Royal Children's Hospital in November.
Their January wedding has been put on hold and their mortgage payments continue to be due.
Ms Anderson is confident Xander's big day will come in time, but the reality of what this joyous day will mean for them is always in her mind.
"I think a lot about what this donation means for another family. It will be an absolute tragedy for them, but for us it means a new life," she said.
Xander has biliary atresia, in which the bile ducts that carry the waste products from the liver are blocked, causing a toxic build-up in his body.
RCH surgeons hoped Xander could be treated with the Kasai procedure, where part of his own intestines would be used to replace the blocked bile duct and delay the need for a new liver.
But once inside, they found Xander's liver was too scarred.
"They told us he needs the transplant now and we wouldn't be going anywhere until he gets one," Ms Anderson said.
Xander has been on the Victorian organ donor list for the past three weeks, a listing doctors initially delayed hoping he could reach the 8kg mark and reduce the risks of surgery.
Despite switching to specialised formulas and pumping nutrients directly into his blood stream, Xander -- who now weighs 5.7kg -- has gained just 200g in four months in hospital.
"He's putting on weight but it's like climbing a mountain, we feel like we're not moving very far," Ms Anderson said.
And so the wait continues.
Each night Ms Anderson sleeps on the couch in Xander's room, while Mr Redman bunks down at Ronald McDonald House before heading to work after Woolworths transferred his job.
"If my son was a different person, we'd be in a different boat as to how we're handling the situation. He makes it so easy for us," she said.
''He really is a true fighter."
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