Four year old Ana_Carolina is trapped in her motionless body. Starship has recommended she die a natural death but her parents are fighting for her to return home and live a life under their care.
They wanted to bring Ana-Carolina home - now they don't have a home to bring her to.
The parents of the paralysed 4-year-old are about to place their family home on the market because of the financial pressure of caring for their daughter.
Peter Bircham and Elane de Moraes Lobohave spent more than 1300 days without a break at Ana-Carolina's bedside, spending 20 hours of each day in Starship hospital's paediatric intensive care unit.
The hospital is just 10 minutes' drive from their Parnell home, but bridging that distance with their girl has proved a fraught process amid a relationship breakdown with the Auckland District Health Board.
Ana-Carolina is said to be "locked in" to her body - she has almost total paralysis and needs a mechanical ventilator to breathe.
Peter Bircham and partner Elane De Moraes Lobo are putting their family home on the market because of the financial pressure of caring for paralysed daughter Ana-Carolina. Photo / Jason Oxenham
But she's medically stable and the overwhelming medical view is that home is the best place for her.
Ana-Carolina is said to be "locked in" to her body - she has almost total paralysis and needs a mechanical ventilator to breathe. But she's medically stable and the overwhelming medical view is that home is the best place for her. Photo / Supplied
It's a view Bircham and de Moraes Lobo share but the way in which it will happen has been one of the points of conflict with the health board.
Now, it's a moot point after the most recent visit to their bank saw them needing to sign an agreement to sell their Parnell home in exchange for a further advance on their mortgage.
"We haven't got a choice," said Bircham. "The bank has told us they're not going to support us any more so we have to."
The couple haven't worked since Ana-Carolina's body began to fail and in the time since, draw-downs on their home value for an income has sent the mortgage "ballooning".
Their home is modest, by Parnell standards, with a valuation of about $1.6 million. The mortgage has floated from about $500,000 to above $800,000 in the past three years.
Bircham said he and Elane were realistic about the need to move - they were also facing a need to contribute to the modifications that would have been necessary to bring Ana-Carolina home.
That would have been another battleground - the multi-level house itself wasn't an acceptable solution to the Ministry of Health, which obtained a quote showing it would cost about $700,000 to convert it though extensive alterations, including installing a lift.
The cost would have been shared by Bircham and de Moraes Lobo, although the extent of that was unknown. They had hoped to raise money by subdividing their home.
But the ministry decision stated: "It is more cost-effective for the family to relocate to another house that is more practical and readily suited or requires only minimal modifications to meet Ana-Carolina's disability-related needs."
While that battle has been avoided, the sale of their home raises another issue - how to buy a suitable home close to the hospital.
For Bircham, it is an issue he believed should have been resolved two years ago - the period of time the entire assessment project had taken.
It now left the family trying to find a five-bedroom house in one of the most expensive parts of the country so they can stay close to the hospital, albeit with a substantial deposit. The size of the house, he said, was necessary to provide bedrooms for him and Elane, Ana-Carolina, his son Ryan, the caregiver and storage for medical equipment.
They can't get a house modified until they have bought one - and believe they can't buy one that is suitable because of the cost of the Auckland market.
He said leaving Auckland, or even moving to the outskirts, was not an option the family wanted to consider because of the distance from the hospital.
"We're just going to get caught in a loop. We won't have enough to buy a house outright. We're trapped in no man's land."
Ministry of Health documents reviewed by the NZ Herald show that the assessment of the family home took almost two years to complete.
The needs assessment process began in May 2015 and was completed in April 2017.
A spokeswoman for the Ministry of Health said that most assessment took 6-8 months to complete but more complex cases could take longer.
The funding available to support disabled people living at home had three separate assessment processes and two different funders, she said. The ministry helped with the cost of housing modifications and vehicles while district health boards assisted with the cost of equipment.
Funding for house modifications was available up to about $8000 but become asset and income-tested after that. Any funding over $28,000 required a review by a Ministry panel. There was an additional maximum of $15,000 for creating access to homes.
