Annaliese Holland is 23 years old and waiting to die in a hospice

Annaliese Holland is terminally ill but determined to battle as long as she can to help others. Now a 12-hour surgery aims to ensure she can keep walking.

Dying is extremely lonely for 23-year-old Annaliese Holland.

But she is determined to hold on for as long as she can to make a difference to others.

She’s also fighting for the sake of her loved ones.

Surrounded by elderly people, Annaliese spends her time in Laurel Hospice not knowing how long she has left, and sometimes ruing being robbed the opportunity to live a full or long life.

Diagnosed with auto-immune autonomic ganglionopathy (AAG) when she was 19, doctors have told Annaliese if her heart stops “they will not resuscitate” her as she will likely not survive the compressions.

“Sometimes it can feel like I’m a prisoner in my own body,” she said.

Now Annaliese, who volunteers and raises money for The Hospital Research Foundation, is waiting to undertake the “biggest operation of her life” where doctors will attempt to correct the kyphosis – a forward rounding of the upper spine – expected to take 12 hours.

The medications she is on has caused her to have extremely weak bones and without this surgery any break could cause the 23-year-old to never walk again.

“I have no choice … it’s going to be huge, I’ll likely be put in an induced coma for a period of time (afterwards),” she said.

“I want to thank every doctor and nurse that’s helped me.”

While awaiting her life-altering surgery, Annaliese wants to tell her story – something she never imagined she’d share.

“Why should I take my story to the grave and no one know about it?” she said.

Annaliese Holland, who was diagnosed with auto-immune autonomic ganglionopathy, has been told she is terminal. Pictures: Supplied

Annaliese could not eat or drink normally for three years. Pictures: Supplied

By sharing her journey Annaliese raises money through the foundation for palliative care services – hoping to make a difference in people’s lives after she’s gone.

“Why was I put on this life for a short time? I have to help someone,” she said.

AAG has attacked Annaliese’s nervous system leaving her with multiple organ failures.

She is unable to eat or drink normally.

“Until recently I didn’t eat or drink anything for three years, not even ice chips,” she said.

She is constantly in debilitating pain, having to inject herself with pain relief every few hours, and is always nauseous, vomiting up to 10 times a day.

Annaliese’s symptoms began as pelvic pain when she was 12 – a pain doctors initially believed to be endometriosis. She had a laparotomy to remove endometriosis but the pain continued.

She has fought sepsis in ICU more than 20 times. Pictures: Supplied

“I get frustrated and angry that there’s not enough awareness for rare diseases like mine,” she says. Pictures: Supplied

For years the Onkaparinga Hills resident went undiagnosed, with doctors treating her symptoms while continually testing for different illnesses.

“You’re stuck in your body and you’re getting all these horrible symptoms and no one believes you, you think you’re going crazy,” she said.

“I get frustrated and angry that there’s not enough awareness for rare diseases like mine … if they found what I had, I wouldn’t be in this position today.”

Annaliese is kept alive by a feeding drip after constant bowel obstructions led to her losing 10 feet of her bowel.

She has a tube that goes through her chest and into a big artery in her heart where she receives total parenteral nutrition (TPN) – a complex form of nutrition she receives every night.

During her health battle Annaliese has developed intestinal and bladder failure. She also has Addison’s disease, severe osteoporosis and osteonecrosis of her hips. She’s had countless blood transfusions, blood infections, brain swelling and also had sepsis more than 20 times leaving her in ICU fighting for life.

Annaliese has lost her friends while battling AAG. Pictures: Supplied

She mourns the life she was never able to live. Pictures: Supplied

Despite going through extremely invasive and traumatising experiences, Annaliese did not tell her friends she was sick.

“I basically, throughout this, lost all my (childhood) friends,” she said.

“I didn’t want people to treat me differently. I didn’t want them seeing how sh*t I looked and felt – I felt embarrassed.

“I didn’t want them to see me as sick.”

Annaliese hasn’t had a visitor outside of her family in four years.

“(On social media) you watch everyone live their lives … that’s really hard while you’re stuck in a ‘prison cell’.”

While being online has been difficult, Annaliese has used the power of the internet to find others who have AAG including a girl called Amy from England who went on to become of one her best friends.

“She was the first person I ever found that had this illness,” she said.

“We were almost the same.

“She ended up getting a bowel transplant … she passed away a year later.”

Annaliese Holland wants to keep living. Pictures: Supplied

Annaliese with a therapy pony in her hospice. Pictures: Supplied

She said the difference between being younger and terminal and older is “when you’re old, you have so much to look back on – you have memories, you have things to laugh about, cry about”.

“When you’re younger you’re mourning the life you never had.

“You haven’t had many moments, especially when you’ve been sick for so long, you haven’t created many of them … I won’t be able to have a baby or get married … you don’t have all of that.”

There have been times when Annaliese hoped her disease would take her.

The first time was two years ago after her colon was taken out and she’d spent three weeks in ICU.

“That was probably my darkest moment.”

But two years ago, when Annaliese suffered a seizure, she realised she did want to live.

“When you have a seizure your brain switches off to protect it because of the lack of oxygen, so it’s very, very scary,” she said.

“I was in the back of the ambulance, crying, saying to mum ‘please don’t let them kill me, please, I want to live, I want to live, don’t let them not resuscitate me, do everything’.

“When you’re having a stable day, it’s like ‘well I want to keep living’.”

She’s also fighting for her loved ones.

“A lot of people who are terminal, you keep going for your loved ones,” she said.

“Because you know once you’re gone, they’ll be in pain that you’re not here, so that’s hard.

“I know it will really destroy them.”

Originally published as Annaliese Holland is 23 years old and waiting to die in a hospice