A young woman who is unable to move and struggles with ‘brutal’ pain from a rare condition will use euthanasia laws to end her own life.
Lily Thai, 23, will die on Wednesday through South Australia’s voluntary assisted dying law, which the state enacted back in January.
Lily – believed to be one of the youngest Australians to legally take her own life – has been diagnosed with auto-immune autonomic ganglionopathy.
It is a condition where a person’s body attacks their own nervous system, leaving them bedridden, unable to move and in a state of constant pain.
Lilly is receiving palliative care at Laurel Hospice at Flinders Medical Center south of Adelaide and signed papers last week confirming her decision.
Lily Thai (pictured with fellow patient and AAG sufferer Annalise Holland, 23) will use the Euthanasia Act to end her own life on Wednesday
One photograph shows Lily relaxing on a bed, enjoying a serving of McDonald’s fries and gazing out at the golden sand and blue waters before her.
‘I decided the pain was so intense it wasn’t worth it, and I wanted to take it into my own hands,’ he told Adelaide newspaper The Advertiser.
Lily is preparing herself for the difficult moment and she is busy getting her affairs in order.
Health care workers granted one of his final wishes to visit a beach and took the 23-year-old ashore in the back of an ambulance.
One photograph shows Lily relaxing on a bed, enjoying a serving of McDonald’s fries and gazing out at the golden sand and blue water before her.
Lily has struggled with health issues since she was a teenager, with a doctor first diagnosing her with Ehlers-Danlos syndrome at age 17.
A year later, he contracted an upper respiratory infection that left him unable to walk, use his bowels, or eat or drink without getting sick, according to the Advertiser.
He received treatment for a spinal fluid leak, which he initially believed he had, but it did not improve his condition.
Lily then traveled to Sydney and finally found some relief through specialist care provided by a team of doctors at Macquarie University Hospital.
He also went to a surgeon who specialized in patients with Ehlers-Danlos syndrome.
By this stage, his condition had deteriorated to the point where he wore a halo brace – which forms a ring around the patient’s head, preventing them from moving their head or neck while their spine is heeled.
He also had to use a nasal feeding tube because he couldn’t eat anything without getting sick, keeping his scales at 40kg.
Lily had spinal fusion surgery and a tube inserted to help drain stomach acid.
The surgery took place in the middle of the Covid pandemic, meaning he was not allowed visitors. He was discharged early due to being alone for such a long time.
Lily was then referred to a neuroimmunologist in Sydney who formally diagnosed her with AAG.
Then he also discovered that his condition had led to multi-organ failure and a large lesion was found on the left side of his brain.
Lily’s condition deteriorated to the point where she wore a halo brace and was fitted with a nasal feeding tube.
Lily returned to Adelaide and was admitted to Laurel Hospice at Flinders Medical Centre, where she spent her days ‘just surviving’.
He is gripped by the heartbreaking thought that it is only a matter of time before he leaves his body.
Lily spends most of her time sleeping in her hospital bed to avoid dealing with the constant chronic pain from her condition.
It was lonely, if not for family visits and he developed a close friendship with a fellow patient, Annalise Holland, 23, who suffered from the same condition.
Annaliese’s symptoms began at age 12 with severe pelvic pain.
Doctors initially believed she had endometriosis, but her symptoms continued to worsen after treatment.
Doctors tested him for several ailments during his teenage years, but could not diagnose him.
It wasn’t until she was 19 that Annalise was correctly diagnosed with AAG.
Like Lily, the rare condition has left her with chronic pain, multiple organ failure and the inability to eat or drink normally, relying instead on a feeding drip.
He experiences constant nausea, vomits 10 times a day and has battled sepsis, blood infections and brain swelling.
His bones are also brittle and weak due to taking many medicines. Doctors are unable to revive Annalise if her heart stops because the compression would kill her.
He is currently preparing for major surgery, where doctors will try to correct the curvature of the upper spine. It is expected to take 12 hours.
Lily was admitted to Flinders Medical Centre’s Laurel Hospice (pictured) after returning to Adelaide from Sydney.
Both Lily and Annalise say that living with a terminal illness at a young age is different because you mourn ‘the life (you) never had’.
Annalize comforts Lily to make her final days more bearable.
‘All I can do is brush her (Lily’s) hair or moisturize her feet. I just want him to know that I’m there and that people care,’ she said.
Lily explained that it was difficult for her friends and family after she made the decision to go through voluntary assisted dying.
‘Mum (me) had to leave the house, because she was getting too much, but they respect my decision and they don’t want to see me suffer anymore,’ she said.
But she explained that it got to the point where she ‘lost control of everything else in my life’.
He is at peace with his decision and has already written heartfelt letters to friends and family, said goodbye and planned parts of his funeral.
He invited donations for palliative research to The Hospital Research Foundation on his memorial card.
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