At just 25 years old, Annaliese Holland has made the profound decision to end her life through assisted dying, concluding a lifelong battle with a rare and debilitating autoimmune disorder.
A Childhood Defined by Pain
Annaliese Holland, from Adelaide in South Australia, has known severe pain since her earliest years. She spent most of her childhood in hospital, with doctors struggling to identify the illness causing her constant suffering. As she grew older, her mysterious condition intensified, leaving her in horrific daily pain, accompanied by relentless nausea and vomiting.
It was not until her 18th birthday, upon transitioning from paediatric to adult care, that she finally received a diagnosis. Doctors confirmed she had Autoimmune Autonomic Ganglionopathy (AAG), a rare neurological disorder that attacks the nerves controlling vital functions like heart rate, blood pressure, and digestion.
The Devastating Reality of a Terminal Diagnosis
This long-awaited clarity came with devastating news: her illness was already terminal by the time she reached 22. Despite defying the odds, her body has been ravaged by the disease. Annaliese now lives with multi-organ failure and has survived life-threatening sepsis an astonishing 25 times.
Years of heavy medication have led to severe osteoporosis, making her bones extremely fragile. She has fractured her spine in four places and split her sternum, coming dangerously close to crushing her heart and lungs.
Her digestive system is in constant turmoil. "My bowel acts as if it’s blocked, but there’s nothing actually blocking it," she explained. "It’s just the nerves don’t 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."
Long-term steroid use has caused her bone tissue to die, turning her teeth black before they gradually fell out. For the past decade, she has relied on total parenteral nutrition (TPN), receiving all nourishment through IV lines, a treatment that carries a high risk of rapid sepsis.
The Emotional Toll and a Heartbreaking Choice
The relentless physical suffering has taken a severe toll on her mental health. She watches from the sidelines as her peers celebrate life's milestones—graduations, birthdays, marriages, and children—while her own life feels stagnant. "I’m not living. I’m surviving every day, which is tough," Annaliese said. "Even though there are beautiful moments in my days, they are exhausting and long. I’m in chronic debilitating pain."
The turning point came when she looked in a hospital mirror and no longer recognised the person staring back. "It wasn’t me and I was so exhausted," she recalled. Her decision to seek voluntary assisted dying (VAD) deeply affected her family.
Her father, Patrick, initially struggled, asking if she was giving up. He came to understand after a harrowing hospital visit where she was resuscitated and pleaded with him to let her go. "He turned to me and goes, ‘I don’t know how you do it, and I totally understand that you’ve had enough'," Annaliese recounted.
After assessments with psychologists, she was approved for VAD just three weeks later. The approval brought an immense sense of relief. "I think it’s so weird to be happy, but I was so happy when I found out I was approved, I was crying," she said.
Annaliese emphasises that her choice is not one of surrender, but of peace. "It’s one of the bravest things you could ever do, to say I want VAD. It’s not giving up. You’ve had enough, and you fought bloody hard." She now faces the future with a sense of control, no longer fearing the pain of starving or the horror of repeated sepsis.
