Alisha Kapoor knows little outside the walls of the Children's Hospital at Westmead, in Sydney's west.
She turns five in a few weeks but has spent the majority of her life living at the hospital, away from her parents and two siblings in Blacktown, 13km away.
"I think we have two houses, one here, and one there," her father Raj Kapoor told SBS News.
"This is my second house. My wife, she stayed almost one and half years, or more, in the hospital, 24/7."
Alisha Karpoor has an incredibly rare genetic disorder. Source: SBS News
Alisha has an incredibly rare genetic disorder; surfactant protein C deficiency, which affects less than 10 children in Australia. It means she struggles to breathe and is permanently on a ventilator.
"The lungs are lined by this protein called surfactant, and that ensures that the lungs remain inflated," Alisha's doctor Chetan Pandit explained. "In her condition, there is no surfactant protein C, so as a result, her lungs actually collapse like a balloon."
But while Alisha needs a lung transplant, Dr Pandit says it is safer to transplant a new heart at the same time.
"Technically it is very difficult for the cardiothoracic surgeons to separate the lungs from the heart," Dr Pandit said. "As a result, in her case, it will have to be the heart and lung together. Technically it is much better to do it as a block transplant, rather than separating just the lungs."
Dr Chetan Pandit with SBS reporter Matt Connellan Source: SBS
Among this comes a positive. While Alisha will become the youngest heart-lung transplant recipient in Australia, her heart is perfectly healthy. It means she can donate it, and save another young life in the process.
"We feel very good [about it]," Mr Kapoor said.
"Someone will save my kid, and my kid will save someone else. Everyone should be a donor, it's a precious gift of life."
Mr Kapoor is urging everyone to think about organ donation and the lives that could be saved.
"It's a very difficult time for families to be on the donor list, when someone is in hospital," Mr Kapoor said. "I think everyone should talk beforehand. Something can happen to me, or to anyone, anytime.
"It's good to think before, about helping someone."
Alisha Karpoor and her father, Raj. Source: SBS
In 2016, more than 1,700 lives were saved by 503 deceased organ donors and 267 living donors.
"It all relies on the generosity of Australians to make that decision when they're alive, that they wish to leave a legacy behind and give other people a chance to live," Transplant Australia CEO Chris Thomas said. "And then, for their families to confirm that decision."
Alisha has been on the waiting list for nearly 12 months. There's no timeframe on when a new heart and lungs may become available - but when it does she will be flown to Melbourne immediately for the transplant.
The Kapoor family's bags are packed, ready to receive the life-changing call at any time. And when they do, it will be Alisha's first step on the road to recovery.
"She dreams of going to London, to see London Bridge," Mr Kapoor said. "Maybe I can take her one day."
