sepsis<\/a> 25 times. Years of heavy medication have left her with severe osteoporosis, weakening her bones and making them extremely fragile.<\/p>\nOn top of that, Annaliese has fractured her spine in four places, split her sternum and come dangerously close to crushing her heart and lungs.<\/p>\n
Along with daily nausea and vomiting, her bowel often backs up. She explained to News AU: \u201cMy bowel acts 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.\u201d<\/p>\n
Her long-term steroid use has also caused her bone tissue to die, turning her teeth black before they gradually fell out and for the past decade, she has relied on total parenteral nutrition (TPN), taking all nourishment through IV lines.<\/p>\n
\u201cI 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,\u201d she told News AU, “because of the line straight into your bloodstream, if you get an infection, it turns to sepsis really quickly, which is very, very dangerous.\u201d<\/p>\n
![\"Years](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/11\/1764449829_231_0_Woman-25-with-debilitating-rare-disease-wants-to-end-life-with-medical-aid.jpg\")
Years of hospital stays and heavy treatment have taken a huge toll on her body(Image: annaliese_holland\/Instagram)<\/p>\n
Everything she endures daily has taken a severe toll on her mental health. She watches on as she misses major milestones – graduations, birthdays, while her friends go on to have babies and get married. To Annaliese, her life isn\u2019t moving. She feels stuck in time.<\/p>\n
\u201cI\u2019m not living. I\u2019m surviving every day, which is tough – I was so miserable,\u201d she added, “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.\u201d<\/p>\n
And while she tries to hold on to those beautiful moments, she told her family she wants to die on her own terms.<\/p>\n
But even through the pain, the decision didn\u2019t come easily. It followed the day she looked at herself in a hospital mirror and no longer recognised the person staring back.<\/p>\n
\u201cIt wasn\u2019t me and I was so exhausted,\u201d she recalled., \u201clife 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.\u201d<\/p>\n
The news also deeply affected her family. Her mother, Armanda, sees the daily battles her daughter faces and still hopes for a miracle. Her father, Patrick, told News AU he has watched her fight through every setback.<\/p>\n
\u201cEvery time she goes to the hospital, she fights for her own life,\u201d Patrick said, holding back tears, \u201cthe amount of times Annie has been in hospital and on her deathbed\u2026 to have to sit there and watch her go through it.. but she is amazing.\u201d<\/p>\n
![\"It](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/11\/1764449830_19_0_Woman-25-with-debilitating-rare-disease-wants-to-end-life-with-medical-aid.jpg\")
It took a while for a dad to come onboard with her decision(Image: annaliese_holland\/Instagram)<\/p>\n
Annaliese also recalled a night speaking to her dad in the kitchen, admitting she had had enough to which he asked, \u201cSo you\u2019re giving up?\u201d<\/p>\n
He finally came to terms with her decision after a hospital visit where she was resuscitated by doctors. She pleaded with him to let her go, telling him she wouldn\u2019t hate him if he agreed.<\/p>\n
\u201cI said, \u2018If this happens again, I don\u2019t want anything. And please know that in my heart, you letting me go and saying no to treatment\u2026 I\u2019m happy with and that\u2019s what I want\u2019\u201d she said through tears.<\/p>\n
\u201cHe turned to me and goes, \u2018I don\u2019t know how you do it, and I totally understand that you\u2019ve had enough\u2019.\u201d<\/p>\n
Eventually, Annaliese was approved for voluntary assisted dying (VAD) three weeks after meeting psychologists and completing her assessment. The approval felt like a weight lifting from her shoulders – one she had carried for years.<\/p>\n
\u201cI think it\u2019s so weird<\/a> to be happy, but I was so happy when I found out I was approved, I was crying,\u201d she said.<\/p>\n\u201cIt\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.\u201d<\/p>\n
![\"Her](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/11\/1764449830_935_0_Woman-25-with-debilitating-rare-disease-wants-to-end-life-with-medical-aid.jpg\")
Her illness has left her missing milestones most people take for granted(Image: annaliese_holland\/Instagram)<\/p>\n
Annaliese says she no longer wants to wake up each day with anxiety about the pain coming.<\/p>\n
\u201cThe 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, “I feel so lucky that I do have this choice.\u201d<\/p>\n
\u201cIt\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.\u201d<\/p>\n
However, Annaliese will not be able to pursue euthanasia as she initially hoped, because it requires the person to take the prescribed medication themselves and is illegal. Instead, VAD and Medical Aid in Dying (MAID) are legal options across parts of Australia – including South Australia, for terminally ill adults who can make their own decisions.<\/p>\n","protected":false},"excerpt":{"rendered":"After years of debilitating pain caused by a rare disorder, a 25-year-old woman has reached for a life-changing…\n","protected":false},"author":2,"featured_media":290310,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[117592,6612,59,102,2196,1906,12372,8083,56,54,55],"class_list":{"0":"post-290309","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-assisted-suicide","9":"tag-blood-pressure","10":"tag-gb","11":"tag-health","12":"tag-hospitals","13":"tag-mental-health","14":"tag-osteoporosis","15":"tag-prescriptions","16":"tag-uk","17":"tag-united-kingdom","18":"tag-unitedkingdom"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/290309","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/comments?post=290309"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/posts\/290309\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media\/290310"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/media?parent=290309"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/categories?post=290309"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/uk\/wp-json\/wp\/v2\/tags?post=290309"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
![\"The](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/11\/0_Woman-25-with-debilitating-rare-disease-wants-to-end-life-with-medical-aid.jpg\")
The decision didn’t come easily but it brought the relief she was seeking for years(Image: annaliese_holland\/Instagram)<\/p>\n![\"Annaliese](\"https:\/\/www.newsbeep.com\/uk\/wp-content\/uploads\/2025\/11\/1764449829_684_0_Woman-25-with-debilitating-rare-disease-wants-to-end-life-with-medical-aid.jpg\")
Annaliese says she’s been ‘surviving, not living’ for years(Image: annaliese_holland\/Instagram)READ MORE: ‘I thought my toddler had a cold – but worrying symptom proved it was diabetes’<\/a>READ MORE: ‘I lost two sisters to sickle cell disease – more awareness could’ve saved their lives’<\/a><\/p>\n