WHEN Jack Kenny was seven months old, he was diagnosed with a condition that had been successfully managed by medication until a bout of influenza in November "tipped his heart over the edge".
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"We didn't know what was happening. He faded quickly," Jack's mum, Victoria Kenny, said. "He was working hard at breathing, and he wasn't eating. Once we were admitted into PICU at the John Hunter, he went into cardiac arrest and almost died. It was by far the scariest night of our lives."
Jack, now two, has been living in a hospital room ever since.
He was flown from John Hunter Children's Hospital to Westmead, and then to the Royal Children's Hospital in Melbourne, home to the National Paediatric Heart Transplant Centre.
He had "plateaued" at Westmead, so doctors had put him on an "extracorporeal membrane oxygenation" machine, known as an ECMO, to stabilise him enough to get him to Melbourne.
"Essentially it does the work of the heart and the lungs - blood is pumped out of the heart into this machine and the machine then oxygenates it, and pumps it back into the body," she said. "It is massive, and confronting, to see all of these cannulas and tubes coming out of your baby, but it was enough to stabilise him."
Mrs Kenny said they had known since Jack's diagnosis with dilated cardiomyopathy - a condition that leaves the heart's main pumping chamber enlarged and weakened - that he might need a transplant one day.
"There's no cure for cardiomyopathy, so unless the heart improves on its own, there's not much else they can do for it," she said.
Now, as the Nelson Bay family plays the "waiting game" for a heart transplant for Jack, they have been torn between desperation and despair, knowing their gain would be someone else's loss.
"It is hard to wish for something that you know comes out of tragedy," Ms Kenny said. "You're constantly hopeful, but at the same time, you just can't wish that upon anyone.
"It's a battle of emotions."
For the past four months, Jack has been living at the Melbourne hospital within a two-metre radius of a machine that keeps his blood pumping.
Less than a month ago, Jack's baby sister, Chloé, was born: A little ray of sunshine that had lightened some dark and anxious days.
Jack was listed for a transplant in January.
It was "anyone's guess" how long they may need to be in Melbourne.
"There are a lot of families in the hospital here, in the same position as Jack, who have been waiting longer than us, and when a heart becomes available, it goes to the most suitable candidate," Mrs Kenny said.
"You've got factors like blood type, tissue type, and also the size of the heart."
Then, amid the hospital visits and appointments - Jack's baby sister, Chloé, was born: A little ray of sunshine that had lightened some dark and anxious days.
Chloé was born at the Royal Women's Hospital in Melbourne, less than a month ago.
"We had one night before we flew down to Melbourne where we got to go home and pack up our life for God knows how long," Mrs Kenny said. "I managed to pack a few newborn things as well. It was a bit of a surreal experience to pack up suitcases, not knowing when we would be home. When we arrived in Melbourne, the doctors were pretty quick to put Jack on another machine called the Berlin heart. It's this amazing little pump that sits outside of him, and it is attached to this machine that helps pump the blood back into the heart, so that it doesn't have to work as hard. It has a two metre line attached, so he has the ability to move around, I guess, but keeping a two year old within a two-metre boundary is quite challenging.
"He is attached to it at all times. We can unplug it, but we've only got a 30-minute battery window.
"We try to take Jack downstairs and sit in the sun for 20 minutes, and then we have about five minutes to get back upstairs."
Mrs Kenny said they had been "really fortunate" for the support of HeartKids, which had offered them an apartment to use that was close to the hospital in Melbourne.
"We can cross the road and be back with Jack at a moment's notice, which has been a godsend," she said. "The hardest part is going to sleep at night, knowing he is in hospital, and you don't get to experience that normal family life.
"You miss the simple things, like being able to sit on the couch as a family.
"We have pretty much spent the whole of summer inside a hospital."
Mrs Kenny and her husband, Patrick, urged people to donate blood.
"Also - have the talk with your family about organ donation. In Australia it is opt in, rather than opt out. And until it gets to that time, a lot of people often don't think about it."
Mrs Kenny said a colleague from Wine Selectors - Isabella Batkovic - had set up a Go Fund Me page to help cover their living expenses.
They had been touched by the "unexpected kindness" of the friends and strangers who had supported them while they could not work.
"We still need to buy food, and we still have bills to pay," Mrs Kenny said.
"But to feel the support and love for Jack has just made my heart swell."
They would be eternally grateful for the financial help during this tricky time with Jack, whose prominent cheeks had bloomed when he was one month old.
"They set in early, and he became like a real life Cabbage Patch kid," Mrs Kenny laughed.
To support the family, search for "Baby Jack - big cheeks and an even bigger heart" at gofundme.com.
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