When Eamon Marshall was born there was no hint of the profound disabilities that would confine him to a wheelchair unable to walk, talk or understand.
But a nagging "mother's intuition" came to a head when Eamon, now 16, was diagnosed with tuberous sclerosis, cerebral palsy, severe epilepsy, visual impairment and intellectual disability at six months old.
The crushing blow left his Napier parents, Glenn and Fran Marshall, reeling.
"I still remember it like it was yesterday," his father says. "Fran just curled up in a ball, gasping for air. It was like someone had hit us with a sledgehammer."
By the time Eamon was 18 months old the couple realised they could not provide the overwhelming, intensive care he needed.
"He needs support for feeding, bathing, turning in bed during the night, and close visual observation to monitor his frequent seizures, for which he needs medication," Glenn Marshall says.
Sometimes the seizures are so severe Eamon's entire body "shakes like an earthquake".
They made the heartbreaking decision to get professional help for Eamon, and in 2004 he was placed in foster care through a disability services provider.
The Marshalls, who have another son three years older than Eamon, visit their disabled child most nights, feeding him, changing his nappy and putting him to bed.
"It's not that we don't love our boy," Glenn says.
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"If I could give him my brain or my heart or something tomorrow and it would make him better but it would end my life, I'd do it in a heartbeat."
As Eamon grew, the couple became increasingly concerned with his foster care, at the time overseen by IDEA Services.
In May 2015 his special needs school alerted Oranga Tamariki - Ministry for Children to its concerns about the teenager's health and hygiene.
His parents also complained to IDEA Services about their son's care and its own investigation discovered Eamon's seizure medication was not being administered correctly, his medication folder was not correctly maintained and medication was signed for in error.
Eamon was also being fed unsuitable food and IDEA Services had missed nine monthly visits to the foster home in a two-year period. They had also failed to engage with Eamon's school. Eamon was moved to another facility.
The couple then complained to the Health and Disability Commissioner [HDC] about IDEA Services and embarked on a four-year battle with a handful of agencies and government departments over their son's care.
In a decision that will be published next month, the HDC was critical of some of the care provided to Eamon by his foster mother, but noted she was not a professional.
The HDC also found IDEA Services breached Eamon's rights by lacking oversight of his care and deliberately removing critical findings from its investigation to minimise the significance of its failings.
In their latest battle, they are taking the HDC to the Human Rights Review Tribunal, suing for $300,000 for significant loss of dignity and humiliation.
The complaint relates to two breaches.
The first is over HDC's refusal to add a correction to its investigation into Eamon's care.
The Marshalls objected to a comment by his foster mother that he would "fling his arms around" making it hard for her to administer his medication. The Marshalls and Eamon's paediatrician say it's not possible because he can only move one arm slightly.
Glenn Marshall says the belated agreement to add the correction, seven months after it was requested, did not remedy the situation.
The second part of their complaint is over its refusal to release email chains between the HDC and IDEA Services relating to another complaint the couple made.
Marshall, an insurance broker, is representing the family in the case.
He has vowed to his son to defend his rights and get change for all disabled New Zealanders.
"I said 'Mate, I promise you, your voice will be heard.
"At the end of this process I want to be able to look him in the eye - he doesn't understand but it doesn't matter - and say 'Mate, your voice was heard.' Regardless of the outcome."
The Marshalls are taking Eamon's case as far as they can to raise awareness of what they say is an "abuse of power".
In part, they are fighting to not only give their son a voice but all disabled people in care.
"They don't have the ability to articulate what's going wrong," Glenn Marshall says. "These vulnerable consumers; what mechanisms do they have in place to support them with lodging a complaint? None."
Through the Official Information Act, the Marshalls discovered HDC formally investigates an average of 80 to 100 complaints a year, 4 per cent. It closed 2932 complaints last year.
Of those 80 to 100, HDC finds breaches on about 60 complaints.
In a letter to Health and Disability Commissioner Anthony Hill, Marshall wrote that he was doing everything possible to "bring about important and long-overdue change within the HDC" and it is apparent the organisation has "major problems".
"To fix the problems will require you to have the moral courage to put your hand up and acknowledge that you are failing hundreds of complainants per annum," he wrote.
"I genuinely believe that you and your senior management team are out of touch, and this is in large part because you operate in a vacuum and are either not fully aware, or worse, indifferent to what is happening at the grassroots level."
Glenn Marshall wants an overhaul of the office that came into being in 1994 after the Cartwright Inquiry into the Unfortunate Experiment at National Women's Hospital.
"My key reason for sharing this story is to inform the public of their rights and to bring about meaningful change.
"In my view, HDC appears to adopt a preference of provider appeasement, at the expense of upholding the rights of consumers.
"I urge consumers that have complained to the HDC to request under the Official Information Act and Privacy Act a copy of all information relating to their complaint, including provider responses."
In a statement to the Weekend Herald, Hill said it was not appropriate to comment on Eamon's case because legal proceedings were under way.
However, he pointed out HDC made recommendations or educational comments on 448 complaints in the last financial year and 99 per cent of its recommendations were complied with, "ensuring that improvements were made to health care in New Zealand as a result of complaints".
"New Zealand has a no-fault compensation system that is the envy of much of the world.
"If you are asking about a more litigious system, with all that entails, that is a significant change to New Zealand's current ACC environment and something that needs a much wider public conversation and legislative change."
Health Minister Dr David Clark did not answer a detailed list of questions from the Weekend Herald about whether the HDC's behaviour was appropriate or whether he would review the effectiveness of the office.
Instead, he repeated what he had previously told the Marshalls, that it was not appropriate for him to intervene.
A recent damning paper by University of Auckland Professor Jo Manning published in the New Zealand Law Review, examines whether the HDC complaints process offered consumers an acceptable and effective mechanism for asserting their legal rights and securing just outcomes.
"All too often complainants and consumers who utilise the complaints regime, which is the only avenue available to them to address their grievances, are denied access to justice," Manning wrote.
"Over half of those who make a complaint are turned away without any remedy from the process and nowhere else to turn.
"And if theirs is one of the very small minority of complaints the Commissioner decides he will investigate, neither party can challenge on appeal the merits or substantive fairness of the Commissioner's decision."
Manning says that when patients or their loved ones are affected by poor health care they want answers.
"I don't think consumers are after blood. Most people are very understanding when things go wrong," she told the Weekend Herald.
"They know that people are trying to do their best in what is often a very stressed and under-resourced environment.
"But when things go really wrong they want some honesty, they want some answers. Very seldom actually do they want money.
"Usually the only meaning they can derive out of it is that they might make the system better for the next patient, the next family."
Manning says the fact the HDC was before the Human Rights Review Tribunal as a defendant was "exceptional".
"It certainly raises a prima facie concern that the Health and Disability Commissioner's office has a few questions of itself to ask.
"That together with other concerns about the office would make us question whether the office is quite the public watchdog on health matters that we would want it to be."
Former HDC complaints assessor, Dr Stuart McLennan, calls the case unique and says it could damage the public trust in the office.
Eamon Marshall is no longer under the care of IDEA Services. He is with another provider in the Hawke's Bay, one his parents have confidence in.
They have spent hundreds of hours pursuing Eamon's case because he can't.
The couple reflects on what life might have been like if Eamon was not born with the rare genetic condition tuberous sclerosis that causes growths in the brain and other organs leading to his severe disabilities.
"We wonder what his voice would sound like. Would he have been playing football with his brother?"
The boy with "a bit of attitude", who prefers Milo to juice and has no qualms making that known to his parents, is living an unimaginable existence.
When Eamon was 8 a doctor pulled the Marshalls aside and asked them if they had considered an end of life plan. This is their reality.
Now their youngest child's health is deteriorating. Eamon is fragile, and due for major spinal surgery at Starship next month to relieve a severe scoliosis.
"I'm afraid he will die before there's an outcome," Glenn Marshall says.
"I know he doesn't understand but for me, it's about having his voice heard. This is a story about how we treat our most vulnerable people."
A timeline of complaints
Fairhaven School in Napier verbally notifies Oranga Tamariki of concerns they have about Eamon Marshall's foster care, which is overseen by IDEA Services, in relation to his health and welfare.
His parents, Glenn and Fran Marshall, complain to IDEA Services about concerns they have with Eamon's foster care.
A contractor service to the Ministry of Health asks IDEA Services to investigate the Marshalls' concerns. The Ministry also conducts an investigation that finds Eamon's medication was mismanaged.
IDEA Services' investigation discovers Eamon's seizure medication is not being administered correctly, his medication folder is not correctly maintained and medication is signed for in error. Eamon is fed unsuitable food, and IDEA Services is not providing appropriate oversight of his care. That includes missing nine monthly visits to his home in a two-year period and failing to engage with Eamon's school.
The HDC later finds IDEA Services did not manage the Marshalls' complaint properly and this was reflective of "a culture of non-compliance within IDEA Services' senior leadership team". Eamon is uplifted from foster care and moved to another facility.
The Marshalls complain to the Health and Disability Commissioner about IDEA Services. An investigation is launched and in a decision that will be published next month, the HDC is critical of some of the care provided to Eamon by his foster mother, but noted she was not a professional.
The HDC also finds IDEA Services did not follow its own complaints policy, and that staff deliberately removed information from its investigation report to minimise the significance of its findings.
The Marshalls lodge a complaint against IDEA Services to the Human Rights Review Tribunal. It's the first of three complaints they will take to the Tribunal against IDEA Services.
The Marshalls make a second complaint to the HDC, this time about a psychologist's report into residential care options for Eamon. They claim the psychologist is unprofessional, biased and that a facility she recommends for Eamon is not appropriate for his needs. The HDC eventually closes the complaint and takes "no further action".
The Marshalls make Official Information Act requests to the HDC for all information gathered by the HDC relating to the complaint about the psychologist's report. The HDC releases some information but refuses to release emails from an IDEA Services staff member that include personal information about Eamon, other non-personal correspondence, and internal legal advice.
Eventually, the HDC releases the emails in a redacted form. The Marshalls complain to the Ombudsman who says the blacked-out information in the redacted emails is personal and Eamon is entitled to this. He transfers that part of the request to the Privacy Commissioner and recommends to the HDC the non-personal correspondence also be released.
HDC sends information gathered during the investigation into Eamon's care to the Marshalls, which shows IDEA Services breached some of Eamon's rights. The Marshalls object to a comment by Eamon's foster mother that he would "fling his arms around" making it hard for her to administer his medication. The Marshalls and Eamon's paediatrician say it's not possible for Eamon to fling his arms because he can only move one arm slightly.
The Marshalls ask the HDC to correct the statements. The HDC refuses to add a statement of correction saying that would be tantamount to reopening the investigation and the Marshalls complain to the Privacy Commissioner. The dispute puts publication of the decision on hold.
Investigators for the Privacy Commissioner meet with lawyers for the HDC, who agree the redacted emails contain personal information to Eamon. But they still won't release them.
The Marshalls lodge a complaint at the Human Rights Review Tribunal against the police for withholding video interviews held between police and IDEA Services staff over the case.
The HDC tries to push the request to release the unredacted emails back to IDEA Services. The Privacy Commissioner says it is too late to do that.
The Privacy Commissioner warns the HDC it will be in breach of the Privacy Act on both complaints. Health and Disability Commissioner Anthony Hill seeks a face-to-face meeting with Privacy Commissioner John Edwards. The other correspondence is released to the Marshalls and the legal advice is withheld.
The Privacy Commissioner finds the HDC has "interfered" with the privacy of Eamon. The HDC remains emphatic that it cannot add a statement of correction to its report but finally relents. The Marshalls lodge a claim at the Human Rights Review Tribunal on behalf of Eamon for $300,000 for significant loss of dignity and humiliation on both breaches. A hearing is yet to be set.
The HDC attaches the correction to the last page of its 81-page report into Eamon's neglect and says the decision will be published in September.