Annaliese is dying at just 25 years old. Now she hopes her unimaginable story can save others from her tragic fate – and inspire young people to soak up every moment

For most of her life, Annaliese Holland has been trapped in a battle against her own body.

At 18, after years of suffering, she was diagnosed with autoimmune autonomic ganglionopathy (AAG), a rare neurological disorder that attacks the nervous system.

By 22, she was told she was terminal. 

Now 25, Annaliese has endured unimaginable pain, the loss of independence, and the heartbreaking realisation that she will never live out the future she once dreamed of.

But despite it all, she has found her purpose: turning her tragedy into advocacy, ensuring that others do not suffer in silence as she once did.

Annaliese’s health issues began when she was just 11 after a case of glandular fever spiralled into something far more insidious.

‘I had a few issues as a kid, but nothing serious enough to end up in hospital. But after glandular fever, everything changed,’ she told FEMAIL.

By 13, Annaliese was diagnosed with endometriosis after a laparoscopy, and she underwent an experimental Botox treatment for pelvic floor dysfunction, desperate for relief.

For most of her life, Annaliese Holland has been trapped in a battle against her own body

The 25-year-old from Adelaide has been diagnosed with autoimmune autonomic ganglionopathy (AAG), a rare, debilitating illness

Annaliese’s health issues began when she was just 11, and what started as a case of glandular fever soon spiralled into something far more insidious

But the moment she woke up from the procedure, her life took another drastic turn. 

‘I couldn’t wee at all and after that, I started getting really unwell,’ she recalled.

She was admitted to the Women’s and Children’s Hospital in Adelaide, suffering from bowel obstructions, severe pain, and a body that seemed to be shutting down.

Her blood pressure and heart rate became unstable, her pupils remained dilated, and she could no longer eat.

‘My entire gut shut down,’ she said.

‘I was placed on TPN (total parenteral nutrition), which is IV nutrition, because my intestines were failing. Over the next three or four years, all my organs just started shutting down.’

TPN is administered when someone cannot eat or absorb nutrients through their gut.

As of 2025, Annaliese has been on TPN for ten years; she couldn’t eat anything at all for the first four years, after which she could chew food for the taste but then she had to spit it out. 

For much of her life, Annaliese lived within the walls of the hospital

By 13, Annaliese was diagnosed with endometriosis after a laparoscopy, and she underwent an experimental Botox treatment for pelvic floor dysfunction, desperate for relief

The procedure typically costs $3,000 a week and is exceptionally underfunded in Australia.

For much of her teenage life, Annaliese lived within the walls of the hospital.

Her condition worsened, yet no one could explain why.

‘We tested for everything. I had genetic testing done, but nothing made sense,’ she said.

‘I felt like I was crazy. My body was failing me, but no one could tell me why.’

It wasn’t until 2018 – after she had transitioned into the adult healthcare system – that Annaliese’s doctors sent her to Melbourne, hoping for answers.

At the Royal Melbourne Hospital, she finally received a diagnosis: autoimmune autonomic ganglionopathy, a rare neurological disorder that attacks the autonomic nervous system.

‘When I got that diagnosis, I actually felt happy,’ she said.

‘Even though it’s not a great diagnosis, it was a relief to finally have a name for it. We could start researching, we could start treating it. But at the same time, I felt let down. Why wasn’t this found earlier?’

It wasn’t until 2018 – after she had transitioned into the adult healthcare system – that Annaliese’s doctors sent her to Melbourne, hoping for answers

Doctors attempted treatments – plasmophoresis to cleanse her blood, high-dose steroids to suppress her immune system – but her body continued to deteriorate

The diagnosis came with heart-wrenching news: from diagnosis, the life expectancy for AAG patients is only six to nine years.

Despite finally having a name for her illness, Annaliese’s suffering didn’t stop.

Doctors attempted treatments – plasmophoresis to cleanse her blood, high-dose steroids to suppress her immune system – but her body continued to deteriorate.

‘I was constantly battling sepsis. I lost so many central lines because of infections,’ she said.

‘I developed Avascular Necrosis, which is where the blood supply to your bones dies, and then your bones crumble. I’ve had it in my legs and jaw. My spine fractured, leaving me with scoliosis and kyphosis. My face would swell from the steroids. My hair thinned. My body was unrecognisable.’

The illness robbed her of everything she had once taken for granted.

‘I used to be really fit. I got into para-science, I wanted to be a paramedic,’ she said.

‘But suddenly, my future was gone. Instead of making plans, I was just trying to survive the next day.’

‘I developed Avascular Necrosis, which is where the blood supply to your bones dies, and then your bones crumble. My spine fractured, leaving me with scoliosis and kyphosis,’ Annaliese said

Doctors attempted treatments – plasmophoresis to cleanse her blood, high-dose steroids to suppress her immune system – but her body continued to deteriorate

As her illness progressed, Annaliese lost her ability to eat, and multiple bowel surgeries left her with permanent stoma bags.

‘My belly was covered in scars, tubes, bags, I hated how I looked. When I first got sick, I didn’t ask my doctors if I was going to die – I asked them if I was going to be ugly,’ she said.

She withdrew from social media, cut off friends, and disappeared from the world she once belonged to.

‘I thought if I just waited, if I just got through this, I’d be me again. I didn’t want anyone to see me like this.’

In 2022, four years after her diagnosis, Annaliese’s body had reached its breaking point.

‘I kept losing central lines because of infections, and I only had one vein left for nutrition,’ she said.

‘Without that, I’d have no way to survive.’

Doctors told her there was nothing more they could do, and she was placed in palliative care and admitted to a hospice.

As her illness progressed, Annaliese lost her ability to eat, and multiple bowel surgeries left her with permanent stoma bags

Determined to make a difference, Annaliese set a goal: walk 3km in the City to Bay fun run to raise money for the hospice

‘I told my team I didn’t want any more treatment,’ Annaliese said.

‘I was done. I didn’t care if I died the next day.’

She spent months in the hospice, isolated, with no visitors.

‘I felt like a shell of myself. I thought, “No one would care if I died”. I had lost all hope. I was just waiting for it to happen.’

Then, one day, she turned to her mother and said something that would change everything.

‘I told her, “If I die tomorrow, no one would come to my funeral. No one would know I even existed. I haven’t achieved anything”,’ she recalled.

That realisation sparked something inside her.

‘I thought, why am I ashamed of my illness? Why am I taking my story to the grave when I could help even one person get diagnosed earlier and avoid this suffering?’

‘I met a girl named Lily in hospice. She had the same disease as me. She became one of my best friends,’ she said

Annaliese has dedicated herself to raising awareness and funds, ensuring no one else has to face what she has alone

Determined to make a difference, Annaliese set a goal: walk three kilometres in the City to Bay fun run to raise money for the hospice.

She defied the odds, completing the walk and raising $15,000 in the process.

‘When I spoke out about it, it kind of blew up in our state. I didn’t expect that. It gave me a reason to keep going,’ she said.

In the years since, Annaliese has dedicated herself to raising awareness and funds, ensuring no one else has to face what she has alone.

‘I met a girl named Lily in hospice. She had the same disease as me. She became one of my best friends,’ she said.

Lily made the heartbreaking decision to undergo euthanasia at just 23.

‘I held her hand while she went,’ Annaliese said.

‘No young girl should have to go through that. Before she died, I promised her I’d keep raising awareness, and I will.’

Though she has outlived many doctors’ predictions, Annaliese knows her time is limited

Instead of weddings and baby showers, Annaliese has spent the past three years writing eulogies for friends her own age

Though she has outlived many doctors’ predictions, Annaliese knows her time is limited.

‘I have a lot of anger now,’ she admitted.

‘Everyone around me is getting married, having babies, starting careers, and I feel stuck. I never got the chance to have those things.’

Instead of weddings and baby showers, Annaliese has spent the past three years writing eulogies for friends her own age.

‘I’ve never been to a wedding, but I’ve been to so many funerals,’ she said.

‘People forget, they move on. And I just wonder, what was I here for?’

But she refuses to let her suffering be for nothing.

‘If I can stop just one person from going through this, maybe that’s why I’m here,’ she said.

Her message is clear: talk about chronic illness, death and the things we’re often too afraid to say.

‘The only reason we’re scared of death is because we don’t talk about it,’ she said.

‘It’s just part of life, like birth. And if we talked about it more, it wouldn’t be so terrifying.’

Even as she faces the unknown, Annaliese is determined to leave a legacy – not of suffering, but of change.

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