A little girl who has spent almost her entire life at Auckland's Starship Hospital has finally been allowed to go home.

Shedding tears of joy and grinning through their teeth, parents Peter Bircham and Elane de Moraes Lobo wheeled their six-year-old daughter Ana-Carolina out of the hospital's front doors "not looking back" this afternoon.

The Herald captured Ana-Carolina's "precious" first moments inside her own purpose-built Orewa home where tonight she will sleep in her own bed before eating dinner at the family's dining room table.

"I'm speechless, for so long we have been fighting for this day and now it has finally come, it feels amazing," de Moraes Lobo told the Herald.

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Since Ana-Carolina was 5 months old her parents have spent 20 hours of each day caring for their daughter at the hospital's intensive care unit, often sleeping only every second day.

Ana-Carolina lost her ability to breathe, speak and move due to a neurological disorder called Guillain Barre syndrome, discovered when she was just months old.

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Ana-Carolina turns 5 - trapped inside her body and inside Starship hospital where she lives

She has the active and inquiring mind of any school-age child but is almost completely paralysed.

But she continues to fight - communicating by blinking her eyes or with the limited use of her eye-controlled computer, and breathing through a ventilator.

Peter Bircham and partner Elane de Moraes Lobo with their daughter Ana Carolina at Ronald McDonald House in 2017. The little girl - now 6 - has finally been allowed to come home. Photo / Jason Oxenham
Peter Bircham and partner Elane de Moraes Lobo with their daughter Ana Carolina at Ronald McDonald House in 2017. The little girl - now 6 - has finally been allowed to come home. Photo / Jason Oxenham

In order to move home and ensure Ana-Carolina's safety, two part-time home support workers and a registered nurse for respite care have been provided by Ministry of Health.

Once a month she will be required to go back to Starship Hospital for checkups.

Her parents have been fighting for five years for the right to bring her home - which health authorities agreed was the best place for her - so she could experience a normal life.

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National advocacy group CCS Disability Action have lent the family the Orewa home for as long as they need.