IT HAS been a long journey fraught with complications, but 14-month-old Wil Schneider is finally on his way home.
He was born in an emergency caesarean on June 22 last year after developing the serious condition foetal hydrops, which caused fluid to build up in his chest and abdomen.
Born early at 31 weeks, Wil struggled to breathe, and spent four months in neonatal intensive care.
There were a few weeks at home with mum Melissa, dad Adrian and three-year-old sister Aubrey before Wil's condition again deteriorated, necessitating a further four months in paediatric intensive care.
In a measure of his fragile hold on life, Wil was baptised in the neonatal intensive care unit, and referred to palliative care only a few months ago.
Monash Children's Hospital head of respiratory medicine Dr David Armstrong said doctors first thought Wil's breathing difficulties were the result of reflux, ''where the milk doesn't stay in the stomach, it comes up into the gullet and you breathe it into the lungs''.
They took a lung biopsy, which Dr Armstrong sent to London when local clinicians were left scratching their heads.
Wil was diagnosed in December with pulmonary interstitial glycogenosis, a condition that has impaired the development of his lungs and only been confirmed in a handful of children worldwide.
Steroid treatment has been successful in strengthening his lungs, and yesterday Wil was off home, having spent all but a few weeks of his life in hospital.
Mrs Schneider said hospital life had come to feel normal, with staff tracking Wil's weight on a large poster fixed on a wall of his room and Aubrey racing around the paediatric ward in a plastic car.
But with her daughter spending a lot of time in day care, she said ''having to juggle time with either Wil or Aubrey'' had been one of the most difficult aspects of the past year.
Dr Armstrong said Mrs Schneider had coped incredibly well with the turbulent journey.
''Mel does not get stressed, she is the calmest cucumber. I've seen a lot of kids with a lot of sickness and Mel is amazing,'' he said. Two operations later, and after a total of eight months in neonatal and paediatric intensive care, Dr Armstrong said Wil's outlook was excellent.
He will return to the hospital for monthly steroid treatments for the next three months, but Mrs Schneider was confident her family could now enjoy time together at home.
She looked forward to ''maybe soon being able to go on holiday or for a weekend away'' with her family, but said ''even being at home will feel like a holiday''.
The story Where there's a Wil, there's a way to beat a rare and debilitating respiratory condition first appeared on The Sydney Morning Herald.