Lily Thai, 23, to take her own life under euthanasia laws in South Australia

A young woman unable to move and struggling with “excruciating” pain from a rare condition will use euthanasia laws to end her life.

Lily Thai, 23, will die on Wednesday under South Australia’s voluntary assistance in dying laws enacted by the state in January.

Lily – believed to be one of the youngest Australians to legally commit suicide – has been diagnosed with autoimmune autonomic ganglionopathy.

That is a condition where a person’s body attacks its own nervous system, leaving her bedridden, unable to move and in a constant state of pain.

Lily is receiving palliative care at Laurel Hospice at Flinders Medical Center in south Adelaide and last week signed papers confirming her decision.

“I decided the pain was so bad it wasn’t worth it, and I just wanted to take it into my own hands,” she told Adelaide’s The advertiser newspaper.

Lily has prepared for the difficult moment and she has been busy getting her affairs in order.

The healthcare staff granted one of her last wishes to visit a beach and transported the 23-year-old to shore in the back of an ambulance.

One photo shows Lily resting on a bed, enjoying a portion of McDonalds fries and looking out over the golden sand and blue water in front of her.

Lily has been battling health issues since she was a teenager, with a doctor first diagnosing her with Ehlers Danlos Syndrome when she was 17.

According to the advertiser, a year later she developed an upper respiratory infection that left her unable to walk, use her bowels, or eat or drink without getting sick.

She was treated for a spinal fluid leak, which she initially thought she had, but it did not improve her condition.

Lily then traveled to Sydney and eventually found it some relief from expert care from a team of doctors at Macquarie University Hospital.

She had also seen a surgeon who specialized in patients with Ehlers-Danlos syndrome.

At this stage, her condition had worsened to the point that she was wearing a halo brace – which forms a ring around the patient’s head, preventing them from moving their head or neck as their spine buckles.

She also had to use a nasal feeding tube because she couldn’t eat anything without getting sick, tipping the scales at 40kg.

Lily underwent spinal fusion surgery and was given a tube to reduce gastric acid secretion.

The surgery took place in the midst of the Covid pandemic, which meant she was not allowed visitors. She was fired early because she struggled to be alone for so long.

Lily was then referred to a Sydney neuroimmunologist who formally diagnosed her with AAG.

At that time, she also discovered that her condition had led to multi-organ failure and a large lesion was found on the left side of her brain.

Lily went back to Adelaide and was admitted to the Laurel Hospices at Flinders Medical Centre, where she spends her days ‘just surviving’.

She struggles with the heartbreaking thought that she only had a matter of time before her body gave out.

Lily spends most of her time sleeping in her hospital bed to avoid the constant chronic pain of her condition.

It had also been lonely if not for family visits and the close friendship she formed with fellow patient, Annaliese Holland, 23, who also suffers from the same condition.

Annaliese’s symptoms began from age 12 with severe pelvic pain.

Doctors initially thought she had endometriosis, but after treatment her symptoms got worse.

Doctors tested her for a number of illnesses during her teenage years, but were unable to diagnose her.

It wasn’t until she was 19 that Annaliese was properly diagnosed with AAG.

Like Lily, the rare condition has left her chronic pain, multiple organ failure, and inability to eat or drink normally, dependent on a nutritional drip instead.

She feels constant nausea, vomits 10 times a day and has battled sepsis, blood infections and brain swelling.

Her bones have also become brittle and weak due to the number of medications she is on. Doctors are unable to resuscitate Annaliese when her heart stops, as the compressions could kill her.

She is currently preparing for major surgery, where doctors will attempt to correct the forward rounding of the upper spine. It is expected to take 12 hours.

Both Lily and Annaliese say living with a terminal illness at a young age is different because you mourn the “life you never had.”

Annaliese comforts Lily to make her final days more bearable.

“All I can do is brush her (Lily’s) hair or moisturize her legs. I just want her to know I’m here and people care,” she said.

Lily explained that it was difficult for her friends and family after she made the decision to continue with voluntary assisted dying.

“Mom (had) to leave the room because she thought it was too much, but they respect my decision and they don’t want me to suffer anymore,” she said.

But she explained that it had gotten to the point where she “lost control of everything else in my life.”

She is at peace with her decision and has already written heartfelt letters to her friends and family, said goodbye and planned parts of her funeral.

On her memorial card, she invited donations for palliative research to The Hospital Research Foundation.