Annie wants to be remembered for her kindness when she’s gone.
Behind her smiling blue eyes, Annie is battling a war on all fronts.
One infection away from sepsis, one feeding tube malfunction from starvation, one bone crumble from suffocation, she injects her tiny frail frame with potent drugs 12 times a day just to breathe through the pain of existence.
Annie can’t drink at bars with her friends, can’t eat at her favourite restaurants. She fuels her body with liquid nutrients through a feeding tube yet perversely still battles cravings and hunger pain ignited by the smells of foods around her.
Annie’s smile masks her chronic agony, while her clothing conceals the complex web of tubes into her body and bags to remove the waste and liquids she can’t absorb.
Annie is not someone just waiting to die though. She is a fiercely independent young woman with a whole lot of living to do before her body crumbles.
Plans to move into her own home are afoot, she’s pumped to see Lady Gaga with her mum and big sister. She has a “F**kit List” of dreams to tick off one by one, which includes trying on a wedding dress
“Is that weird?” she ponders
“No man wants to date someone dying, I get it. But I would love to try one on, see what it feels like.”
The irony is stark. While most people Annie’s age are getting married, having babies, she has spent more time at funerals.
“I’ve never been to a wedding but I’ve been to three funerals, and I do eulogies instead of bridesmaid speeches,” Annie says.
“The funerals I’ve been to are young people yet we don’t talk too much about dying and that can be the most terrifying part. That’s what makes it morbid.”
In an exclusive interview at the home she shares with her mum, dad and sister outside of Adelaide, Annie revealed she has been approved for voluntary assisted dying (VAD).
For her it’s a “safety blanket”, a weight off her delicate shoulders.
She now has certainty that she can end the pain when she can’t bear it any longer.
“For me, I don’t 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’t feed me anymore, or the horror of sepsis. Knowing I can go when the time is right is just a huge relief.
“It’s so weird to be happy about it, but I am so happy and I feel so lucky that I do have this choice. It’s controversial and I haven’t really talked about it properly yet. But it’s so important.”
Anguish was etched in Patrick Holland’s eyes when news.com.au visited the family home.
Just home from a day’s work, Holland insisted: “This is not about us, it’s about Annie”.
Reluctant to be involved in the interview, but after not so gentle pressure from Annie, Holland took a seat on the couch.
“Every time she goes to hospital she fights for her own life,” he said through tears.
“It always goes the same way … something that is meant to be so simple goes pear shaped for her.
“The amount of times Annie has been in hospital and on her death bed … to have to sit there and watch her go through it …”
“But she is amazing, anything we have to deal with goes into insignificance because we are not the ones going through it.”
Every time she goes to hospital she fights for her own life.
Holland recalled a time when Annie’s line was infected and needed to be removed.
The medical team wanted to “pull it” – but it was stitched in and Annie was terrified and wanted to be under general anaesthetic.
“She fought, I fought, they wanted to pull it and I’m her Dad was going to kill someone,” he said.
“I walked out of the room and said to them ‘you come in here and tell her’. Every time she goes to hospital she fights for her own life.”
“For her, it’s so scary every time she has to go to hospital. It’s horrendous for her, it’s not fair. “Every time you think she’s had enough she picks herself up. I couldn’t do it.”
Annie is acutely aware of the profound inner turmoil her dad, mum Armanda, and sister Vickie are experiencing as a result of her decision to apply for VAD.
“Dad has laid there with me in the hospital bed, he’s cleaned me up, he’s pressed the button for my pain meds when I couldn’t, he’s cuddled me, wiped away my tears, held my hand late at night,” she said earlier in the day.
“Dad is still coming to terms with it, it’s hard for all of them.”
Annie remembers talking to her dad in the kitchen one night and saying: “Dad I have had enough”.
“So you are giving up?” was her dad’s reply.
“I went ‘No I’ve just had enough. I’m not giving up. I’ve had enough.’”
It wasn’t until one of her “many touch-and-go” nights in hospital after having been resuscitated that she looked at her dad and said “Dad please let me go, I will not hate you if you let me go.
“If this happens again I don’t want anything. Please know in my heart you are letting me go and saying ‘no’ to treatment … that’s what I want.”
Annie’s dad turned to her and said: “I understand. I don’t know how you do it, you’ve had enough. I understand.”
Annie has been sick since she was a child.
“The major stuff started happening in my teen years when I was about 12 or 13 when I was having a lot of issues with endometriosis,” she said.
“We put everything down to that, then glandular fever, so we just thought it was a big mix of those things, then chronic fatigue.”
But after multiple long stays in hospital and countless tests, doctors discovered what insidious condition that was causing Annie’s misery.
She has Autoimmune Autonomic Ganglionopathy – or AAG – a rare auto-immune disease where her immune system attacks her autonomic nervous system. The attacks damage her nerve clusters that control involuntary bodily functions including her heart rate, blood pressure, digestion, and urination.
“It’s not always terminal if it’s caught and treated early,” Annie said.
“But for me my diagnosis was so late, the damage was done and even trying to use treatments was just putting me in more danger of other things taking my life.”
She has multi-organ failure.
“My bowel acts as if it’s blocked but there’s nothing actually blocking it. 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. We tried so much to fix that for nine months.
“I had feeding tubes placed in me and I was still vomiting and then we discovered that my stomach wasn’t emptying so I was put on total parenteral nutrition (TPN), where a bag of nutrition is delivered directly into my bloodstream through a line in my chest that goes through a big vein that goes to the heart.
“At night I am fed with a drip for like 12 hours and I get my fluids the same way to stay hydrated.
“I’ve been on that now for 10 years, which is a long time for TPN because it is like the last option of treatment for nutrition because it comes with loads of risks.
“Because of the line straight into your bloodstream, if you get an infection it turns to sepsis really quickly which is very, very, dangerous.”
Annie has survived sepsis 25 times.
“Each time they have to pull the line out to make you better and there’s only so many big veins you have in your chest and neck that you can actually use to administer TPN.
“I have lost so many now that this current line is my last line left for nutrition so if I lose this then I will die of malnutrition.
“There’s no other way to get me food or fluid that I can tolerate. I don’t want to starve to death.”
Steroids are an essential part of Annie’s treatment but with the powerful drugs come ghastly side effects.
“In my case my osteoporosis is quite severe to the point where I fractured my spine in three or four places and I actually cracked my sternum in half just by falling asleep on the hospital railing bed for like five minutes,” Annie said.
“I woke up and my chest was in so much pain … I got really sick from that because my back started to hunch, I started getting a really severe kyphosis, so bad it actually started to crush my heart and my lungs.”
Doctors told Annie there was nothing they could do – fusing the spine would fail because of her brittle bones.
“I was so miserable with my back that I started doing my own research and I came across this doctor on social media that had operated on old women with osteoporosis so I contacted him.
“By this stage I was at the point where I was falling asleep at night so hunched over that I was aspirating because everything in my stomach would just come out my nose or it would go into my lungs because I was so cramped over.
Annie was “one fracture away” from her spinal cord snapping but the risk was worth taking.
“It was definitely a gamble. It was a 13-hour operation, so it was huge.”
She spent five days in an induced coma post surgery, then two months in hospital recovering.”
“It was a massive surgery and massive recovery and there were complications but it was so worth it because now I have a straight back and it’s given me a lot of quality of life.
“I might not have long but it has given me so much quality and I am hugely grateful for that.”
Steroids also caused necrosis – a condition where the blood supply to Annie’s bones failed.
Her teeth have blackened and are falling out one by one and she’s battling excruciating teeth infections.
“I look like a meth addict,” she jokes, the words a shield against the brutal truth: the disease, not content with its internal ravages, was now systematically dismantling her very reflection.
“Even though I am dying I am 25, I still have things I want to achieve and I’m still a young adult in that sense” Annie says.
“So I’m currently trying to move out and I am waiting on my first rental. It’s really hard because I can’t work, I live on a pension and I need lots of support but I am also so independent.
“I’m really, really excited about it because even if it’s only for a short time, it is something I can tick off the list and at least experience.”
Annie describes her illness as like “walking on a field of landmines”.
“You don’t know when you’re going to set one off and that’s kind of what it’s going to be like for me from now on,” she said.
“I’m probably going to get sepsis or get really sick quite acutely, so unlike people with a cancer diagnosis I don’t have a timeframe.
“That makes it hard because you still want to live but even though you’re not going to be here for long it’s a hard one, because you kind of want to enjoy the moment, but you have so much to manage and juggle and things can go downhill very quickly.”
“I’m not angry that we didn’t find it sooner because you know we’re all human so hopefully I can be the one person that someone else can be diagnosed earlier by speaking out, so they don’t have to be in my position.”
On one of her darker days, Annie was lying in the hospice and said to her mum “No one would come to my funeral, no one would know if I died”.
“And I started thinking about my legacy and asking ‘why am I here for such a short time? Why am I wasting my story and going to the grave and putting it 10 feet under when speaking out could at least help one other person get the diagnosis earlier?’
“That’s so important because I would never ever wish this on my worst enemy.
“It’s so cruel. I mean, I do wish sometimes people could take two steps in my shoes. But I would never ever wish it on anyone.”
Lately Annie’s smile has grown a little thinner.
“I feel bad about this, but when I go to hospitals I get jealous of old people when they’re sick because I think ‘you’ve lived your life at least’ whereas I never really got the chance.
“Being sick young I missed out on formals, graduations, 18th or 21st, they were all in hospital being really sick.
“I didn’t get any of those things and I wasn’t so resentful about it in the beginning because I thought, you know, my time will come. I’ve got plenty of life ahead. But now that things are so hard, yeah I get a little bit angry at the world sometimes.
“All my friends are having babies, are getting engaged, married, and life is moving forward for them but I’m just surviving.
“I really want to have babies, I want it so bad and there’s nothing I can do to change it and that’s what annoys me.
“There’s nothing I can do to stop it and it breaks my heart most days that I can’t have a baby, I can’t have a future like that.”
During one of her hospital stays Annie remembers looking in the mirror and not recognising the sad eyes staring back at her.
“It wasn’t me and I was so exhausted. 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,” she says.
“I am in and out of hospitals with every side effect possible from medications and then when it started taking my teeth, my hair, I remember just looking in the mirror thinking ‘This isn’t me. I don’t know who that is anymore’.
“I turned to my doctors and I said it’s time to start palliative care, I want quality, not quantity anymore.”
That was two years ago.
“It kept me out of the hospital almost for a year last year, which is unheard of. They’ve managed to do everything at home, keep me with my family where I want to be, which is amazing.
“And I think once you make that decision, that’s the time I realised I needed to speak up, raise awareness, because the reality is this is the end.”
When Annie goes to heaven soon she wants to eat coconuts.
In fact, she wants to taste all the foods she hasn’t been able to swallow for years and years.
She wants to share a pizza with her dear friend Lily Thai, who left this world two years ago.
“We used to joke about when we are up there we are going to eat all the foods we can’t eat, all the foods that make us so sick,” Annie recalled with a smile.
She’s at peace knowing her time is near.
Annie didn’t really know much about voluntary assisted dying until she bonded with Lily.
“Growing up I was even someone who went, ‘nah that shouldn’t be legal because what about if you change your mind, or what about things change, or what if someone does it and they’re not meaning it and regret it because some people just had bad days’.
“My whole views of that changed when I got sick, I saw it in a completely different way.
“When I met Lily and I sat down with her I pinky promised I would be by her side through it all, no matter what.
“I was so privileged. I don’t think there’s anything more of a privilege than being asked by someone to be there at that moment.
Twenty-three-year-old Lily, who battled Ehlers Danlos syndrome, died with dignity in June, 2023.
“I held her hand as they administered the euthanasia. And it was just one of the most beautiful things I’d ever been part of. She just closed her eyes, and it was so God-damn peaceful.”
Annie is consumed by the terrifying certainty that the inevitable removal of her feeding line will condemn her to a slow, agonising starvation.
“I don’t want to be screaming in pain for hours because I’ve been there before and it’s awful,” she said.
“I have the most incredible team of doctors and nurses who have watched what I have been through and I told them I don’t want this anymore.
“I had to speak to psychologists to make sure it wasn’t just a bad moment. So I went through the VAD process and within three weeks I found out I had been approved.”
Annie cried, while her family members, who are traumatised by years of witnessing her agony, still struggle to come to terms with her decision.
“I think it’s so weird to be happy, but I was so happy when I found out I was approved, I was crying,” Annie said.
“When we go to a funeral we are so sad because the person never gets to see how special they are or ever gets to hear something that maybe no one would ever say to their face. This way people get to say all those things.
“Obviously I would want to be at home when I do it, but then I also worry about my family because this is their safe place.
“This is a place where they remember me being me. I would hate for them to have a place where they’re always reminded of that moment and there is no escape for them.
“It’s hard because for me I am in pain and then I am at peace, but then I put the pain on to 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.”
Annie knows VAD is a controversial subject but she wants to help be a vehicle for change.
“Talking about death and choices shouldn’t be taboo,” she said.
“Because I do carry quite a smile and happiness, I look happy all the time, I think people don’t understand what I go through and what I have been through and why I would make this choice,” she said.
“My days, even though there’s beautiful moments in my days, they are exhausting and long. I’m in chronic debilitating pain, I experience vomiting and nausea every day and I’m in constant pain. I’m just surviving, I don’t have quality of life. I’m just keeping up with keeping myself alive until the next land mine explodes. And it’s lonely.
“At the end of the day it’s my body, I’ve spent 12 plus years being part of a system, a number, not a person, and the pain inflicted on me … it’s my turn, it’s my choice, nobody else’s and that’s a conversation we all should be able to have.”
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