Alisha Kapoor is connected to a ventilator and under 24-hour care. She's been at the Children's Hospital at Westmead in Sydney for four of her nearly five years.
Her father, Raj Kapoor, says the hospital has become the family's second home. Alisha has a medical condition where her lungs do not inflate.
Her doctor, Chetan Pandit, explains the disease, "Alisha has a very rare lung disorder, it's a genetic disorder called Surfactant protein C deficiency. The lungs are lined by this protein called surfactant, and that ensures that the lungs actually remain inflated. In her condition, there is no surfactant protein C, so as a result her lungs actually collapse like a balloon. That's why she is continuously ventilated because she needs that ventilatory support."
The condition is so rare that fewer than 10 children have it in Australia.
Alisha needs a lung transplant but because of her size, it's safer to transplant a new heart at the same time. And while Alisha will become the youngest heart-lung transplant recipient in Australia, her heart is actually healthy.
It means that when she does receive her new heart and lungs, Alisha will be able to donate her own heart and save another young life.
Alisha's been on the waiting list for nearly 12 months. Her family doesn't know when the call will come, but when it does she'll have to fly to Melbourne for the transplant. The family will have to move there for up to four months as Alisha begins rehabilitation.
It'll be the first step to getting Alisha out of the Children's Hospital at Westmead and back home, where she can start to make her dreams come true.
