Terminally ill Annaliese Holland is using the time she has to fight for other young people in palliative care

With her spine bent at 130 degrees threatening to crush her vital organs, terminally ill Annaliese Holland persisted with walking the City-Bay – here’s why.

Woman of the Year finalist Annaliese Holland in Brighton. Picture: Matt Loxton

Annaliese Holland’s life was almost cut short last year after her spine threatened to crush her vital organs.

Having spent most of her 24 years battling auto-immune autonomic ganglionopathy (AAG), a terminal illness which attacks her nervous system and shuts down her organs, Annaliese was faced with a new challenge — kyphosis and scoliosis, symptoms of her medication.

Despite her spine being bent 130 degrees and weeks away from potential death she walked the City-Bay for another year bringing her total amount of funds raised to $30,000 for palliative care, since she started her advocacy two years ago.

Her strength and determination is the reason she is a 2024 finalist in the Inspiration category at The Advertiser Sunday Mail’s Women of the Year Awards, presented by SkyCity.

While walking the City-Bay Annaliese was suffering with kyphosis and scoliosis as a result of her medication.

“The problem she was having with her spine was a consequence of … the other medical issues she’s had … she’s needed very high dosages of medication which weakens the bones that subsequently causes almost every vertebra in her spine to fracture or collapse,” Annaliese’s orthopaedic surgeon Michael Selby told The Advertiser.

“Ultimately what can happen with this condition is that in very severe forms like Annaliese’s, the lungs and heart can start to be compromised by the process.”

Thankfully Dr Selby along with a dedicated team of medical professionals volunteered their time and expertise to operate on Annaliese in a surgery that took eight hours and would’ve cost her $200,000 out-of-pocket.

Annaliese Holland’s before and after life saving spinal surgery from the side. Picture: Supplied

Annaliese Holland’s before and after life saving spinal surgery from the front. Picture: Supplied

Dr Selby said Annaliese would’ve “absolutely” lost her life if she didn’t have the surgery to fix her spine, which he said she likely would’ve been denied in the public health system or waitlisted.

“If you don’t pick it up early enough then it’s very difficult to do the surgery because the lungs won’t get through the operation itself,” Dr Selby said.

“Annaliese was heading that way … she was certainly heading down the path of permanent lung and heart damage from the size of the curve.”

Annaliese Holland was diagnosed with auto-immune autonomic ganglionopathy and has been told she is terminal. Picture: Supplied

Annaliese has raised $30,000 for palliative care. Picture: Supplied

The weeks before her lifesaving surgery Annaliese, while living with a spine bent at 130 degrees, walked the City-Bay for the second time since revealing her personal story.

The funds she has raised so far have gone towards a variety of necessities including two recliner chairs for hospice.

“I feel like every patient that’s passing away deserves to sit out of bed and look at the view one last time and be upright,” she said.

Her advocacy work has also included supporting Lily Thai, who had the same condition as her, and her decision to end her life through voluntary assisted dying legislation in June last year.

Despite being faced with difficult health challenges Annaliese will continue her palliative care charity work. Picture: Supplied

Annaliese is continuing to recover from her spine surgery. Picture: Supplied

After the surgery Annaliese was placed in an induced coma to recover as much as she could.

“I was screaming when they first woke me up … I remember screaming in agony,” she said.

Prior to the surgery the 24-year-old was told she may not be able to walk again so after waking up the first thing she did was move her legs.

“I told them if I can’t walk then I don’t want to be here … so that was a huge thing,” she said.

“The biggest moment was when I first stood up … we all cried.”

Annaliese is still struggling with movement in her left arm but is otherwise continuing to recover from the mammoth surgery.

The young woman has many plans to continue to raise funds and awareness for young people in palliative care including fulfilling the promise she made to Lily to continue her legacy and tell her story.

Winners in The Advertiser Sunday Mail’s Women of the Year Awards will be revealed at advertiser.com.au and in The Advertiser on International Women’s Day on March 8, which this year has the theme #InspireInclusion.