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.<\/p>\n
\u201cWe didn\u2019t notice anything to start with, but then she started showing signs that she wasn\u2019t growing up. <\/p>\n
\u201cWe knew her behaviour had changed, but we didn\u2019t really think too much about it. She was losing weight, but we didn\u2019t really notice that until one of our friends said, \u2018What\u2019s the go with Jayne?\u2019\u201d<\/p>\n
Jayne was diagnosed with autism, and doctors initially thought she had anorexia.<\/p>\n
However, they later determined she was suffering from Avoidant\/Restrictive Food Intake Disorder (Arfid), an eating disorder<\/a> generally driven by sensory sensitivities and rigid eating patterns.<\/p>\n \u201cShe also had allergies to food \u2013 lactose, gluten, soy. So the types of food she could eat became less and less, which exacerbated the problem,\u201d said Mark.<\/p>\n \u201cShe kept losing weight. We couldn\u2019t do anything.\u201d<\/p>\n Jayne was eventually admitted to a specialised eating disorder inpatient unit.<\/p>\n \u201cShe was there for three months. She gained enough weight to be in the \u2018healthy weight range\u2019 and then they discharged her,\u201d her mother, Julie, explained.<\/p>\n \u201cBut that was it; there was no plan for her.\u201d<\/p>\n Back at home, the kilograms began to fall away, and she was hospitalised again.<\/p>\n \u201cThis time we admitted her on the proviso that there was a follow-up plan so she didn\u2019t have to go back a third time,\u201d said Julie.<\/p>\n \u201cShe was there another three months. She was okay on the scales, but the eating disorder was still there \u2026 we were going down the same path again.\u201d<\/p>\n Just before New Zealand\u2019s Covid-19 lockdowns in 2020, Mark and Julie were called to a meeting about their daughter.<\/p>\n \u201cThere was a social worker, someone from hospice \u2026 They basically said Jayne was going to die \u2026 they convinced us palliative care was the way to go,\u201d said Mark.<\/p>\n \u201cWe were told that the only option was drugs to keep her comfortable.\u201d<\/p>\n Another doctor then took an interest in Jayne\u2019s case and came up with a plan to help her. He wanted to get her back into the specialist unit \u2013 but she was well below the 30kg minimum weight limit.<\/p>\n \u201cHe put her in the hospital, and she put some weight on \u2026 but she would have been in there for one-and-a-half years to get to 30kg. There weren\u2019t a lot of options after that,\u201d said Mark.<\/p>\n \u201cThe real underlying issue was, how do we get Jayne to eat more, but that was never addressed. She was too complex, too hard.<\/p>\n \u201cEating disorders are a mental health issue, but we weren\u2019t getting any help with that. Jayne really tried \u2013 she didn\u2019t want to die \u2026. She just could not overcome the mental block, and the Arfid became too powerful. Nobody knew what to do.\u201d<\/p>\n Jayne continued to lose weight. She had to be fed via a tube, which made her feel constantly nauseous.<\/p>\n \u201cOne day she collapsed in the hallway \u2026 she was in really bad shape. She was in the hospital for a few days, and then they discharged her,\u201d Mark said.<\/p>\n \u201cSoon after that, she was in her room, and she called out and said, \u2018I can\u2019t see anything,\u2019 and then she was unconscious. I thought she was dead. They took her away to the hospital again.\u201d<\/p>\n Jayne was then offered a place at a retirement village that offered respite and palliative care services.<\/p>\n \u201cIt was the last place you should put someone Jayne\u2019s age \u2026 but nobody else wanted her. There was nowhere else for her to go. She was there right up until she died,\u201d Mark said.<\/p>\n Jayne hated the place and did not want to spend any time with the other residents.<\/p>\n 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.<\/p>\n She became wheelchair bound and increasingly weaker.<\/p>\n A health worker suggested to her parents that Jayne move home until a more suitable place could be found.<\/p>\n \u201cWe knew that the minute she came home, that would be it \u2013 they would not look for anything else for her,\u201d said Mark.<\/p>\n \u201cAnd our mental health was suffering \u2026 we said no, we are not having her here.\u201d<\/p>\n Jayne died on July 5.<\/p>\n 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.<\/p>\n \u201cTwo 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,\u201d said Julie.<\/p>\n \u201cThey told us to go home. Jayne was telling me, \u2018If I leave the hospital, I will die.\u2019 It took three of us to get her out of the hospital \u2026 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.<\/p>\n \u201cWhen she passed on, I was the only one there. The last thing she said to me was, \u2018Mummy, don\u2019t go \u2026 mummy, don\u2019t leave me\u2019.\u201d<\/p>\n Mark and Julie are traumatised by their daughter\u2019s death, but spoke to the Herald about their journey to raise awareness.<\/p>\n Like many other eating disorder patients and their families, they feel there is a critical lack of help and support in New Zealand.<\/p>\n \u201cBefore 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,\u201d said Julie.<\/p>\n \u201cThere\u2019s not enough. She should have been entitled to a life. This is absolutely horrible \u2026 she didn\u2019t need to die, she didn\u2019t want to die. She just didn\u2019t get the help she needed.<\/p>\n \u201cAnd we felt like we were doing this journey by ourselves. We didn\u2019t have any support \u2026 We had all these people and all these meetings \u2026 people saying \u2018you can get this or you can get that\u2019, but that was about it \u2026 nothing ever actually happened. People should not have to go through this. It shouldn\u2019t have to be us doing every single thing all of the time.”<\/p>\n Mark said it was \u201cabsolutely insane\u201d that a 33-year-old could die of an eating disorder in New Zealand.<\/p>\n \u201cThat\u2019s why she wanted us to promise to do something \u2026 and not just palliative care, there needs to be a place for people like Jayne to go before it gets to that stage,\u201d he said.<\/p>\n \u201cIt felt like \u2018you\u2019re not in the box, so we\u2019ll just shove you here because you\u2019re going to die\u2019. Jayne didn\u2019t want to die.<\/p>\n \u201cJayne was misunderstood. They didn\u2019t understand the way she worked, the way she thought. We spent an enormous amount of time trying to keep Jayne alive.\u201d<\/p>\n Julie said it was harrowing watching Jayne decline in the last few months of her life. <\/p>\n \u201cYou could actually see her declining \u2026 She was too weak; she had a lot of falls. I knew that her time was coming to an end,\u201d she said.<\/p>\n \u201cBut I didn\u2019t want to accept it. I wanted to continue fighting and encouraging her to eat \u2026 It was so, so difficult just looking at her, seeing her wasting away \u2013 looking at her and seeing her with no energy and looking so thin.<\/p>\n \u201cI 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\u2019d never die. I don\u2019t know exactly what we need \u2026 but there needs to be more support.\u201d<\/p>\n Jayne\u2019s 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.<\/p>\n \u201cI\u2019m still reliving all of the memories of her death,\u201d said Julie.<\/p>\n \u201cI\u2019m mostly at home. I don\u2019t want to be by myself, so if Mark goes away for work, I go with him \u2026. I used to go to knitting and quilting groups and ladies\u2019 Bible study, but I haven\u2019t been able to do any of those since Jayne passed.<\/p>\n \u201cI can\u2019t go to the library or supermarket because Jayne was so well known there, and I don\u2019t want people to ask me how she is \u2026 I\u2019m going through all of Jayne\u2019s stuff at the moment, and that\u2019s so hard \u2026 I can\u2019t look at photos of her.<\/p>\n \u201cThis has changed everything for us \u2026 Our entire family is different because of it. It has changed how we see life \u2026 we\u2019ve seen how the health system doesn\u2019t work. I think \u2013 should we have tried harder? Should we have yelled and screamed? This shouldn\u2019t have happened.\u201d<\/p>\n Jayne\u2019s parents spoke to the Herald just days before Mental Health Minister Matt Doocey launched a \u201crefreshed strategic approach\u201d to eating disorders, including more than $4 million in extra funding each year.<\/p>\n \u201cThat\u2019s a 20% increase, which will bring the total investment in eating disorders services to over $23 million annually,\u201d he said.<\/p>\n \u201cSupport 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.<\/p>\n \u201cThe changes today bring about meaningful changes that will ensure the strategy remains fit for purpose and continues to meet the needs of our communities.\u201d<\/p>\n Mark Ferguson was dubious of the announcement.<\/p>\n \u201cIt depends on what they are going to spend the extra money on. It will be interesting to see what changes are made, if any,\u201d he said.<\/p>\n \u2018Jayne\u2019s not the only one\u2019 \u2013 expert<\/p>\n 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.<\/p>\n \u201cYoung Kiwi women are dying from eating disorders when treatment is possible and should be accessible,\u201d she told the Herald.<\/p>\n \u201cIn each case, they were denied the hospital care they had every right to receive. One of these women was someone I was supporting \u2013 we tried urgently to get her admitted over her final weekend. The hospital declined. She died of starvation.\u201d<\/p>\n She said Doocey\u2019s funding announcement was \u201ca welcome step forward\u201d.<\/p>\n \u201cParticularly in its focus on family services. Families are at the heart of recovery from an eating disorder,\u201d she said. <\/p>\n \u201cTheir daily support, care, and persistence often make the biggest difference in whether someone can get well.<\/p>\n \u201cBy strengthening community-based supports for families, this investment recognises that recovery doesn\u2019t just happen in clinics or hospitals, but also around kitchen tables and within households. It\u2019s encouraging to see this commitment, and we\u2019re hopeful it marks the beginning of a sustained effort to ensure eating disorder services are better resourced across New Zealand.\u201d<\/p>\n Schonwald said eating disorders like anorexia were \u201ca deadly mental illness\u201d.<\/p>\n \u201cYet in New Zealand, too often we misunderstand starvation as \u2018choice\u2019,\u201d she said.<\/p>\n \u201cFamilies, 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\u2019s most intelligent, creative, and accomplished people lose the ability to act in their own best interest, and society loses them.<\/p>\n \u201cNeuroscience 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\u2019s own best interest.\u201d<\/p>\n 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.<\/p>\n \u201cEarly 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.<\/p>\n \u201cEach delayed intervention is a preventable loss, not just to a family, but to society itself. It is time for New Zealand to act.\u201d<\/p>\n Schonwold said New Zealand needed to implement \u201cclear protocols\u201d around eating disorders, \u201cto recognise that refusal to eat is rarely voluntary, and to intervene before it is too late\u201d.<\/p>\n \u201cAnorexia is cruel, but it is not invincible,\u201d she said.<\/p>\n \u201cEvery 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.\u201d<\/p>\n No family should have to fight so hard<\/p>\n Voice of Hope co-founder, mental health advocate and eating disorder survivor Genevieve Mora said her \u201cheart absolutely breaks\u201d for Jayne\u2019s family.<\/p>\n \u201cNo 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,\u201d she said.<\/p>\n \u201cEating disorders are life-threatening illnesses, and Jayne\u2019s 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\u2019s, as I know recovery is possible with the right support.\u201d<\/p>\n Mora said the country\u2019s eating disorder services that \u201cdo exist are working incredibly hard and doing the best they can\u201d, but they were under \u201cimmense pressure\u201d, with limited resources.<\/p>\n \u201cToo many people are left waiting, turned away, or told they\u2019re not \u2018sick enough\u2019. This is devastating because early access to care can make all the difference in recovery.<\/p>\n \u201cSeeing 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.<\/p>\n \u201cI also believe that no one should ever be told that there is nothing more that can be done. I truly believe \u2013 and have seen \u2013 that recovery can be possible at every age and every stage. Those affected by eating disorders feel hopelessness enough, without feeling like they\u2019re being given up on.\u201d<\/p>\n Mora said the new strategy was \u201conly the beginning\u201d.<\/p>\n \u201cReal change requires sustained investment and bold action,\u201d she said.<\/p>\n \u201cRight now, people who find the courage to seek help are too often told they\u2019re not sick enough or they\u2019re placed on waitlists that stretch for weeks or months \u2013 making them sicker in the meantime. <\/p>\n \u201cThere 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.<\/p>\n \u201cWe 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.\u201d<\/p>\n 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<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Jayne Ferguson died in July 2025 after suffering from a serious eating disorder. Her parents say she did…\n","protected":false},"author":2,"featured_media":4217,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[2],"tags":[5833,5835,74,5831,5845,2177,5825,5837,5822,5842,2511,4487,124,634,1595,5841,5818,5821,5658,5820,1866,2082,5830,71,5838,5817,2514,5819,5844,5832,5827,5846,5840,4960,5836,5829,3234,130,111,43,139,69,3111,3766,5823,4517,766,4514,5843,1240,5815,2069,5824,1529,5839,5826,5828,5834,102,5816,2248,1530],"class_list":["post-4216","post","type-post","status-publish","format-standard","has-post-thumbnail","category-new-zealand","tag-33yearold","tag-7yearold","tag-after","tag-alive","tag-anna","tag-average","tag-ballet","tag-battle","tag-bright","tag-calling","tag-child","tag-christchurch","tag-could","tag-death","tag-disorder","tag-disorders","tag-eating","tag-everything","tag-experts","tag-ferguson","tag-find","tag-for","tag-fought","tag-from","tag-help","tag-horrible","tag-island","tag-jayne","tag-journalist","tag-july","tag-languages","tag-leask","tag-least","tag-live","tag-lost","tag-many","tag-months","tag-more","tag-new-zealand","tag-news","tag-newzealand","tag-nz","tag-out","tag-parents","tag-passion","tag-past","tag-reports","tag-same","tag-senior","tag-south","tag-speak","tag-stay","tag-talent","tag-three","tag-tragically","tag-violin","tag-wanted","tag-weighing","tag-with","tag-womans","tag-women","tag-years"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/4216","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=4216"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/4216\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/4217"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=4216"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=4216"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=4216"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}Jayne loved ballet and was a perfectionist.<\/p>\n
Jayne was rushed to hospital repeatedly \u2013 and sent home. Photo \/ Jason Dorday<\/p>\n
Jayne Ferguson’s family are devastated by her death.<\/p>\n
Experts say Kiws are dying from treatable eating disorders. Photo \/ 123RF<\/p>\n
Genevieve Mora, a co-founder of mental health charity Voices of Hope, says recovery for people like Jayne is possible with the right support.<\/p>\n