Parents speak out after Christchurch woman’s ‘horrible’ eating disorder death

Jayne Ferguson had autism and an eating disorder. She wanted to live and get well but could not find specialist help or support.

Jayne Ferguson had everything to live for. Bright, with a passion and talent for ballet, violin and languages, she wanted to live – and for many years, fought to stay alive. But on July 5, the 33-year-old, weighing the same as an average 7-year-old child, lost her battle with an eating disorder she could not find help for. Tragically, Jayne is one of at least three South Island women to die from eating disorders in the past few months – and experts are calling for more help. Senior journalist Anna Leask reports.

One of six kids in a busy, bustling Kiwi household, Jayne was a normal, healthy child.

She loved music, dance, crafts, and toys.

But when she hit her early teens, her parents realised something was wrong with their beautiful girl.

“When she hit puberty, then everything went haywire,” her father, Mark Ferguson, told the Herald.

Jayne Ferguson died in July 2025 after suffering from a serious eating disorder. Her parents say she did not want to die but she could not find the right help for her complex illness.

“We didn’t notice anything to start with, but then she started showing signs that she wasn’t growing up.

“We knew her behaviour had changed, but we didn’t really think too much about it. She was losing weight, but we didn’t really notice that until one of our friends said, ‘What’s the go with Jayne?’”

Jayne was diagnosed with autism, and doctors initially thought she had anorexia.

However, they later determined she was suffering from Avoidant/Restrictive Food Intake Disorder (Arfid), an eating disorder generally driven by sensory sensitivities and rigid eating patterns.

“She also had allergies to food – lactose, gluten, soy. So the types of food she could eat became less and less, which exacerbated the problem,” said Mark.

“She kept losing weight. We couldn’t do anything.”

Jayne was eventually admitted to a specialised eating disorder inpatient unit.

“She was there for three months. She gained enough weight to be in the ‘healthy weight range’ and then they discharged her,” her mother, Julie, explained.

“But that was it; there was no plan for her.”

Back at home, the kilograms began to fall away, and she was hospitalised again.

“This time we admitted her on the proviso that there was a follow-up plan so she didn’t have to go back a third time,” said Julie.

“She was there another three months. She was okay on the scales, but the eating disorder was still there … we were going down the same path again.”

Jayne loved ballet and was a perfectionist.

Just before New Zealand’s Covid-19 lockdowns in 2020, Mark and Julie were called to a meeting about their daughter.

“There was a social worker, someone from hospice … They basically said Jayne was going to die … they convinced us palliative care was the way to go,” said Mark.

“We were told that the only option was drugs to keep her comfortable.”

Another doctor then took an interest in Jayne’s case and came up with a plan to help her. He wanted to get her back into the specialist unit – but she was well below the 30kg minimum weight limit.

“He put her in the hospital, and she put some weight on … but she would have been in there for one-and-a-half years to get to 30kg. There weren’t a lot of options after that,” said Mark.

“The real underlying issue was, how do we get Jayne to eat more, but that was never addressed. She was too complex, too hard.

“Eating disorders are a mental health issue, but we weren’t getting any help with that. Jayne really tried – she didn’t want to die …. She just could not overcome the mental block, and the Arfid became too powerful. Nobody knew what to do.”

Jayne continued to lose weight. She had to be fed via a tube, which made her feel constantly nauseous.

“One day she collapsed in the hallway … she was in really bad shape. She was in the hospital for a few days, and then they discharged her,” Mark said.

“Soon after that, she was in her room, and she called out and said, ‘I can’t see anything,’ and then she was unconscious. I thought she was dead. They took her away to the hospital again.”

Jayne was then offered a place at a retirement village that offered respite and palliative care services.

“It was the last place you should put someone Jayne’s age … but nobody else wanted her. There was nowhere else for her to go. She was there right up until she died,” Mark said.

Jayne hated the place and did not want to spend any time with the other residents.

She left as often as she could, racking up thousands of dollars in taxi bills and becoming well known at libraries, malls and on city buses. She was trespassed from various places because the staff did not understand her autism and challenges.

She became wheelchair bound and increasingly weaker.

Jayne was rushed to hospital repeatedly – and sent home. Photo / Jason Dorday

A health worker suggested to her parents that Jayne move home until a more suitable place could be found.

“We knew that the minute she came home, that would be it – they would not look for anything else for her,” said Mark.

“And our mental health was suffering … we said no, we are not having her here.”

Jayne died on July 5.

A week earlier, Mark and Julie had found her unresponsive in bed. She was rushed to the hospital, where she caught a stomach bug and became severely dehydrated.

“Two days before she died, she was taken up to the emergency department, and after seven hours they checked her and said there was nothing wrong with her,” said Julie.

“They told us to go home. Jayne was telling me, ‘If I leave the hospital, I will die.’ It took three of us to get her out of the hospital … we got her back to her room and gave her a couple of hugs, and we went. That was the last time we saw her before she died.

“When she passed on, I was the only one there. The last thing she said to me was, ‘Mummy, don’t go … mummy, don’t leave me’.”

Mark and Julie are traumatised by their daughter’s death, but spoke to the Herald about their journey to raise awareness.

Like many other eating disorder patients and their families, they feel there is a critical lack of help and support in New Zealand.

“Before she died, Jayne said to us that she wanted us to try really hard to get a place for people like her to go. A specialist palace so they could engage in activities and enjoy their life,” said Julie.

“There’s not enough. She should have been entitled to a life. This is absolutely horrible … she didn’t need to die, she didn’t want to die. She just didn’t get the help she needed.

“And we felt like we were doing this journey by ourselves. We didn’t have any support … We had all these people and all these meetings … people saying ‘you can get this or you can get that’, but that was about it … nothing ever actually happened. People should not have to go through this. It shouldn’t have to be us doing every single thing all of the time."

Mark said it was “absolutely insane” that a 33-year-old could die of an eating disorder in New Zealand.

“That’s why she wanted us to promise to do something … and not just palliative care, there needs to be a place for people like Jayne to go before it gets to that stage,” he said.

“It felt like ‘you’re not in the box, so we’ll just shove you here because you’re going to die’. Jayne didn’t want to die.

“Jayne was misunderstood. They didn’t understand the way she worked, the way she thought. We spent an enormous amount of time trying to keep Jayne alive.”

Jayne Ferguson's family are devastated by her death.

Julie said it was harrowing watching Jayne decline in the last few months of her life.

“You could actually see her declining … She was too weak; she had a lot of falls. I knew that her time was coming to an end,” she said.

“But I didn’t want to accept it. I wanted to continue fighting and encouraging her to eat … It was so, so difficult just looking at her, seeing her wasting away – looking at her and seeing her with no energy and looking so thin.

“I spent a lot of time trying to keep Jayne well; it was a constant battle. But I thought as long as we kept feeding her, she’d never die. I don’t know exactly what we need … but there needs to be more support.”

Jayne’s parents are lost without her. Their lives have spiralled from spending every waking minute worrying about Jayne and thinking of ways to help her, to an agonising silence without her.

“I’m still reliving all of the memories of her death,” said Julie.

“I’m mostly at home. I don’t want to be by myself, so if Mark goes away for work, I go with him …. I used to go to knitting and quilting groups and ladies’ Bible study, but I haven’t been able to do any of those since Jayne passed.

“I can’t go to the library or supermarket because Jayne was so well known there, and I don’t want people to ask me how she is … I’m going through all of Jayne’s stuff at the moment, and that’s so hard … I can’t look at photos of her.

“This has changed everything for us … Our entire family is different because of it. It has changed how we see life … we’ve seen how the health system doesn’t work. I think – should we have tried harder? Should we have yelled and screamed? This shouldn’t have happened.”

Jayne’s parents spoke to the Herald just days before Mental Health Minister Matt Doocey launched a “refreshed strategic approach” to eating disorders, including more than $4 million in extra funding each year.

“That’s a 20% increase, which will bring the total investment in eating disorders services to over $23 million annually,” he said.

“Support for eating disorders is best provided using a full continuum of care across prevention, primary health care, early intervention and community services, along with specialist and inpatient services for people with the highest needs.

“The changes today bring about meaningful changes that will ensure the strategy remains fit for purpose and continues to meet the needs of our communities.”

Mark Ferguson was dubious of the announcement.

“It depends on what they are going to spend the extra money on. It will be interesting to see what changes are made, if any,” he said.

‘Jayne’s not the only one’ – expert

Christchurch eating disorder dietician Victoria Schonwald from The Eat Clinic was aware of at least three South Island cases in recent months where women had died as a result of their eating disorder.

“Young Kiwi women are dying from eating disorders when treatment is possible and should be accessible,” she told the Herald.

“In each case, they were denied the hospital care they had every right to receive. One of these women was someone I was supporting – we tried urgently to get her admitted over her final weekend. The hospital declined. She died of starvation.”

Experts say Kiws are dying from treatable eating disorders. Photo / 123RF

She said Doocey’s funding announcement was “a welcome step forward”.

“Particularly in its focus on family services. Families are at the heart of recovery from an eating disorder,” she said.

“Their daily support, care, and persistence often make the biggest difference in whether someone can get well.

“By strengthening community-based supports for families, this investment recognises that recovery doesn’t just happen in clinics or hospitals, but also around kitchen tables and within households. It’s encouraging to see this commitment, and we’re hopeful it marks the beginning of a sustained effort to ensure eating disorder services are better resourced across New Zealand.”

Schonwald said eating disorders like anorexia were “a deadly mental illness”.

“Yet in New Zealand, too often we misunderstand starvation as ‘choice’,” she said.

“Families, friends, and even clinicians see refusal to eat and assume defiance. In reality, a severely malnourished brain cannot make life-preserving decisions. Every day, some of the world’s most intelligent, creative, and accomplished people lose the ability to act in their own best interest, and society loses them.

“Neuroscience makes this clear. Severe malnutrition alters brain structure and function in ways that directly impair decision-making. The prefrontal cortex, the seat of reasoning, planning, and weighing consequences, shrinks under starvation, reducing the capacity to evaluate risk and act in one’s own best interest.”

Schonwold said that in New Zealand, intervention for eating disorders was too often delayed until weight loss reached crisis levels or physical complications became irreversible.

“Early intervention preserves potential. Every timely assessment, every carefully guided nutrition plan, every moment a family or clinician steps in with knowledge and compassion can mean the difference between tragedy and recovery.

“Each delayed intervention is a preventable loss, not just to a family, but to society itself. It is time for New Zealand to act.”

Schonwold said New Zealand needed to implement “clear protocols” around eating disorders, “to recognise that refusal to eat is rarely voluntary, and to intervene before it is too late”.

“Anorexia is cruel, but it is not invincible,” she said.

“Every intervention is an act of hope. Every life saved is a testament to the fact that anorexia is not a choice, it is a biological crisis, one that demands urgent, informed action.”

No family should have to fight so hard

Voice of Hope co-founder, mental health advocate and eating disorder survivor Genevieve Mora said her “heart absolutely breaks” for Jayne’s family.

“No family should have to fight so hard just to get their loved one the care they desperately need and deserve, only to be met with barriers and, in the end, loss,” she said.

“Eating disorders are life-threatening illnesses, and Jayne’s story is a devastating reminder of how urgent it is that change is made. As someone with lived experience and someone who has and continues to interact with others with lived experience, often, many of whom have recovered and are living happy and free lives, I am always saddened to hear of deaths like Jayne’s, as I know recovery is possible with the right support.”

Genevieve Mora, a co-founder of mental health charity Voices of Hope, says recovery for people like Jayne is possible with the right support.

Mora said the country’s eating disorder services that “do exist are working incredibly hard and doing the best they can”, but they were under “immense pressure”, with limited resources.

“Too many people are left waiting, turned away, or told they’re not ‘sick enough’. This is devastating because early access to care can make all the difference in recovery.

“Seeing a boost of funding is a really positive step. I feel hopeful, and I also know that more needs to be done if we want to see real change.

“I also believe that no one should ever be told that there is nothing more that can be done. I truly believe – and have seen – that recovery can be possible at every age and every stage. Those affected by eating disorders feel hopelessness enough, without feeling like they’re being given up on.”

Mora said the new strategy was “only the beginning”.

“Real change requires sustained investment and bold action,” she said.

“Right now, people who find the courage to seek help are too often told they’re not sick enough or they’re placed on waitlists that stretch for weeks or months – making them sicker in the meantime.

“There is nothing more heartbreaking than watching someone reach out for support only to be turned away. Early intervention saves lives, and we cannot afford to keep missing that window.

“We need dedicated funding, stronger peer support pathways, and the establishment of a peak body to ensure accountability, consistency, and lived experience voices at every level.”

Anna Leask is a senior journalist who covers national crime and justice. She joined the Herald in 2008 and has worked as a journalist for 19 years with a particular focus on family and gender-based violence, child abuse, sexual violence, homicides, mental health and youth crime. She writes, hosts and produces the award-winning podcast A Moment In Crime, released monthly on nzherald.co.nz