{"id":43416,"date":"2025-11-20T17:29:34","date_gmt":"2025-11-20T17:29:34","guid":{"rendered":"https:\/\/usdailys.com\/?p=43416"},"modified":"2025-11-20T17:29:34","modified_gmt":"2025-11-20T17:29:34","slug":"25-year-old-woman-with-rare-disease-explains-decision-to-end-life-with-medical-aid","status":"publish","type":"post","link":"https:\/\/usdailys.com\/?p=43416","title":{"rendered":"25-year-old woman with rare disease explains decision to end life with medical aid"},"content":{"rendered":"

 <\/p>\n

 <\/p>\n

Warning: This article contains discussion of assisted dying which some readers may find distressing.<\/em><\/p>\n

A 25-year-old woman with a ‘debilitating’ rare disease has explained why she wants to die by euthanasia.<\/p>\n

Annaliese Holland, from Adelaide in South\u00a0Australia<\/a>, spent much of her childhood in hospital with an illness doctors were never able to pin down.<\/p>\n

Her\u00a0health<\/a>\u00a0condition worsened as she grew older, as she dealt with chronic pain that hit her every day, along with constant nausea and vomiting.<\/p>\n

Annaliese has relied on total parenteral nutrition (TPN) for the past decade, taking all her\u00a0nourishment<\/a>\u00a0through IV lines.<\/p>\n

“My\u00a0bowel<\/a>\u00a0acts as if it\u2019s blocked, but there\u2019s nothing actually blocking it. It\u2019s just the nerves don\u2019t work so, as gross as this is, my stools would back up so much that I would throw it up or drain out my tummy,” she\u00a0told<\/a>\u00a0News AU.<\/p>\n

“I had feeding tubes placed in me, and I was still vomiting, and then we discovered that my stomach wasn\u2019t emptying, so I was put on TPN,” she continued. “Because of the line straight into your bloodstream, if you get an infection, it turns to\u00a0sepsis<\/a>\u00a0really quickly, which is very, very, dangerous.”<\/p>\n

\n
\"Annaliese<\/div>\n

Annaliese Holland, 25, has opened up about her ‘debilitating’ rare health condition (Instagram\/@annaliese_holland)<\/cite><\/div>\n

Annaliese’s diagnosis<\/strong><\/h2>\n

Annaliese finally received a diagnosis at 18, after moving from paediatric care to the main hospital.<\/p>\n

Doctors told the then-teen she had Autoimmune Autonomic Ganglionopathy, a rare neurological disorder that damages the nerves responsible for heart rate,\u00a0blood pressure<\/a>, digestion and urination.<\/p>\n

They also added that her illness was terminal by the time she reached 22.<\/p>\n

She now lives with multi-organ failure and has survived sepsis 25 times with the heavy medication load, leaving her with severe osteoporosis. And that’s not all, as Annaliese has also fractured her spine in four places, split her sternum and has come close to crushing her heart and lungs.<\/p>\n

On top of experiencing nausea and vomiting daily, and having her stool back up so badly, she’d vomit it out, long-term steroid use has also caused bone tissue to die, turning her teeth black before they began to fall out.<\/p>\n

The mental toll<\/strong><\/h2>\n

“I was so\u00a0miserable<\/a>,” she continued. “You can\u2019t change it, so you have to just deal with it, really. Even though there are beautiful moments in my days, they are exhausting and long. I\u2019m in chronic debilitating pain.”<\/p>\n

“I missed out on formals, graduations, my 18th, 21st [birthdays], they were all in hospitals, being really sick. All my friends they\u2019re having babies, getting engaged, and married. Everyone\u2019s life is moving, and I\u2019m just stuck. I\u2019m not living. I\u2019m surviving every day, which is tough.”<\/p>\n

Annaliese added that her disease is like ‘walking on a field of landmines’.<\/p>\n

\n
\"The<\/div>\n

The Aussie detailed her years of ‘chronic debilitating pain’ (Instagram\/@annaliese_holland)<\/cite><\/div>\n

‘I don’t want this anymore’<\/strong><\/h2>\n

Annaliese has candidly explained that she now no longer wants to endure the pain, sharing with her\u00a0family<\/a>\u00a0that she wants to ‘die on my own terms’ with medical aid in dying.<\/p>\n

She came to the decision after seeing herself in the mirror one day while hospitalised and not even recognising herself.<\/p>\n

“It wasn\u2019t me and I was so exhausted,” she recalled. “Life for me now is getting up each day, doing what I need to do medically, taking the painkillers, trying to get through the day, just to go to bed and do it all again.”<\/p>\n

“I have the most incredible team of doctors and nurses who have watched what I have been through and I told them I don\u2019t want this anymore,” she admitted.<\/p>\n

Understandably, such a notion is utterly heartbreaking for Annaliese’s family.<\/p>\n

Her family’s reaction<\/strong><\/h2>\n

Her mother, Armanda, has said she\u2019s always hoping for a miracle, but she ‘knows realistically what challenges’ her daughter faces. Meanwhile, her father, Patrick, told the outlet that he\u2019s seen his daughter overcome every setback and knows she can get past the illness.<\/p>\n

“Every time she goes to the hospital, she fights for her own life,” Patrick said, holding back tears. “The amount of times Annie has been in hospital and on her deathbed\u2026 to have to sit there and watch her go through it \u2026 but she is amazing.”<\/p>\n

Annaliese added: “I remember talking to my dad in the kitchen one night, and I said, ‘Dad, I\u2019ve had enough.’ And he went, ‘So you\u2019re giving up?'”<\/p>\n

She also recalled that the moment that helped her dad come to terms with her decision was when she was in the hospital after being resuscitated by doctors.<\/p>\n

“Dad, please let me go,” she pleaded with him at the time. “I will not hate you if you let me go.”<\/p>\n

“I said, ‘If this happens again, I don\u2019t want anything. And please know that in my heart, you letting me go and saying no to treatment\u2026I\u2019m happy with and that\u2019s what I want,'” she recalled, bursting into tears.<\/p>\n

“He turned to me and goes, ‘I don\u2019t know how you do it, and I totally understand that you\u2019ve had enough’.”<\/p>\n

\n
\"Annaliese<\/div>\n

Annaliese has been approved for voluntary assisted dying (Instagram\/@annaliese_holland)<\/cite><\/div>\n

Voluntary assisted dying<\/strong><\/h2>\n

Just three weeks after meeting psychologists and completing the assessment process, Annaliese was approved for voluntary assisted dying (VAD), something she has called her ‘safety blanket’, which has lifted a weight she had carried for years.<\/p>\n

“I think it\u2019s so weird to be happy, but I was so happy when I found out I was approved, I was crying,” Annaliese said. “It\u2019s hard because for me, I am in pain and then I am at peace, but then I put the pain onto my family. You have this battle in your head of not wanting to hurt them, so I will put some thought into how it will happen.”<\/p>\n

“For me, I don\u2019t want to have to wake up every day with anxiety about the pain that I know is ahead for me. The pain of starving to death when they can\u2019t feed me anymore, or the horror of sepsis. Knowing I can go when the time is right is just a huge relief,\u201d she explained. \u201cI feel so lucky that I do have this choice.”<\/p>\n

The Aussie concluded: “It\u2019s one of the bravest things you could ever do, to say I want VAD. It\u2019s not giving up. You\u2019ve had enough, and you fought bloody hard.”<\/p>\n

Medical aid in dying (MAID) is legal across Australia for terminally ill adults who can make their own decisions. MAID and VAD differ from\u00a0euthanasia<\/a>, which remains illegal, because the person takes the prescribed medication themselves rather than a doctor administering it.<\/p>\n

If you\u2019ve been affected by any of these issues and want to speak to someone in confidence, please don\u2019t suffer alone. Call Samaritans for free on their anonymous 24-hour phone line on 116 123<\/em>\u00a0or contact Harmless by visiting their website<\/em>\u00a0https:\/\/harmless.org.uk<\/em><\/a>.<\/em><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

    Warning: This article contains discussion of assisted dying which some readers may find distressing. A 25-year-old woman with a ‘debilitating’ rare disease has explained why she wants to … <\/p>\n","protected":false},"author":2,"featured_media":43417,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-43416","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/posts\/43416","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/usdailys.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=43416"}],"version-history":[{"count":1,"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/posts\/43416\/revisions"}],"predecessor-version":[{"id":43418,"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/posts\/43416\/revisions\/43418"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/usdailys.com\/index.php?rest_route=\/wp\/v2\/media\/43417"}],"wp:attachment":[{"href":"https:\/\/usdailys.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=43416"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/usdailys.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=43416"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/usdailys.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=43416"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}