Alisha is officially Australia’s youngest lung transplant recipient and, having followed her story since she was three years old, The Sunday Telegraph was invited to finally see her at home.

She was born with a rare condition known as Surfactant C ABCA3 deficiency, which meant her lungs lack a protein needed to help them expand and contract.

Without ventilation, Alisha’s lungs collapse, which is why she has spent almost her entire life in the intensive care unit at The Children’s Hospital at Westmead.

She was on the lung transplant list for 15 months but her size and age worked against her.

“So many times we nearly lost her,” dad Raj Kapoor said.

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Then a call came in the early hours of the morning that a donor set of lungs had become available.

Alisha had to be immediately flown to Melbourne and prepared for surgery the same day.

Head of the Paediatric Lung Transplantation unit at The Alfred Hospital Associate Professor Glen Westall said Alisha was the youngest child to undergo a lung transplant in Australia after the age limit for lung transplant was recently dropped to four.

“She has gone well, she has progressed well. She was in an intensive care unit in Westmead for three years and I don’t think you get any more unwell than that,” Dr Westall said.

“Transplant is as big an operation as you can imagine but her small size made it technically more challenging for our surgeons, but it is what they do.

“It’s transformative, you take a child that has been in hospital for most of their life and with a bit of luck will be walking out of the hospital with very expectation she will do doing what every other five-year-old is doing, going to school, going to parties and not knowing she’d ever had a transplant.”

The surgery took eight hours with a team of 20 people involved over the course of the day, including surgeons, anaesthetists, intensive care physicians, paramedics, the emergency staff, nursing staff and transplant co-ordinators.

“When she was breathing on her own it was a new experience for her, she was very happy and very excited,” Mr Kapoor said.

Alisha returned to her Blacktown home last week, free to finally play with her big sister Aleena, 9, and little brother Avinash, 2.

Mr Kapoor, 30, said he had to remind Alisha every now and then that she is no longer connected to a ventilator.

“I told her to come and play with her brother and she said: ‘I can’t, I have the tube’ meaning the ventilator and I said: ‘Have a look Alisha, you are not connected and she laughed and said: ‘Silly me!’,” he said.

Dr Chetan Pandit, her respiratory specialist from The Children’s Hospital at Westmead, could not be happier for his young patient.

“It’s incredible, she is doing very well and she is unbelievable and looks like a normal child now, her lungs are working well for her and it’s the first time we have been able to get her home,” Dr Pandit said.

Mr Kapoor and his wife Roma are so very grateful to the donor and the family who made Alisha’s future possible.

“We are just so grateful to the donor, because we nearly lost her so many times. Now she is getting ready to go to school next year,” Mr Kapoor said.