Lily Thai spends her final hours saying goodbye to family and close friends who have gathered beside her bed as she prepares to end her own life after a long and painful battle with illness and says she will miss ‘everything’ about life.
The 23-year-old is preparing to die on Wednesday under South Australia’s voluntary assisted dying laws introduced in January.
Lily has autoimmune autonomic ganglionopathy (AAG), an extremely rare condition in which the body’s immune system attacks the nervous system, causing a steady decline in her quality of life since she was 17.
After a weeks-long process that required three formal written requests to end her life, Lily will ask her coordinating physician on Wednesday to administer an intravenous medication that will end her life in 10 seconds.
The doctor, in the presence of a witness, will give Lilly the medication immediately after her final request with her parents nearby.
Lily Thai will be given an IV medication to end her life on Wednesday under new SA laws
Lily and Annaliese Holland, also 23 years old, became close friends after discovering they both suffered from AAG
When she signed the third written request last week, her devastated mother had to leave the room to calm herself down.
“I feel quite numb. I know how hard it will be for my family and friends,” Lily previously told the Adelaide Advertiser.
“But it’s gotten to the point where I’ve lost control of everything else in my life and have been dependent on my father as a caretaker to do everything for me, even the most intimate things.” she said.
Also close by will be her Flinders Medical Center Laurel Hospice ward mate Annaliese Holland, also 23 years old, with the pair forming a close friendship after discovering they both suffered from AAG.
Lily revealed that she wouldn’t be well enough to get out of bed on Wednesday, but will spend the day relaxing as a steady stream of friends and family visit her.
She added that the outpouring of support from people across the country had been reassuring and many old friends had reached out to reconnect, which had been “nice.”
She said she would miss “everything” about life.
Lily could have planned parts of her funeral and said she picked a “nice place” for her burial.
A funeral service is organized that deliberately wants to keep the family small so that Lilly’s loved ones can say goodbye.
Lily and Annaliese hope that by talking about their illness, they will raise awareness about AAG so that the diagnosis can be made earlier and more medical research can be done on the little-understood condition.
She also hopes people will donate to the Hospital Research Foundation in her honour, so that a youth hospice can be established in South Australia, similar to facilities in Perth and Sydney.
“Video game consoles in every room, beautiful views to make it feel more like a bedroom, and nature… those things make it less clinical,” said Lily.
Lily has been sick since she was 17 years old and suffered a non-stop series of medical emergencies
Also close by will be her Flinders Medical Center Laurel Hospice ward mate Annaliese Holland, also aged 23, with the pair struck up a close friendship after discovering they both suffered from AAG
Boyfriend Danika Pederzolli, 28, took Lily to the beach earlier this week.
A heartwarming photo showed the couple sitting in the back of an open-top ambulance as they enjoyed the view of the ocean and some McDonald’s fries.
Ms. Pederzolli, who met Lily through a St. John’s Ambulance cadet program, said she would remember her good friend as having a “vibrant attitude, positive and warm presence.”
She has been battling health issues since she was a teenager, with a doctor first diagnosing her with Ehlers-Danlos syndrome when she was 17.
A year later, she developed an upper respiratory infection that left her unable to walk, use her bowels, eat or drink without getting sick.
She was also treated for a spinal fluid leak.
Lily then traveled to Sydney and eventually found some relief through 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.
Lily Thai, 23, who will use euthanasia laws to end her life on Wednesday, enjoyed a beachside getaway to eat McDonalds with her boyfriend and paramedic, Danika Pederozolli
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 Flinders Medical Center.
A spokesperson for SA Health said: ‘Safe, accessible and compassionate voluntary assisted dying gives eligible South Australians with a terminal illness a choice at the end of their lives.
‘Anyone who participates in the voluntary dying care process can withdraw at any stage of the process.’
It has been available in South Australia since January 31 under strict eligibility criteria.
Between then and April 30, 28 VAD permits were issued.
Of these, 12 people died, including one who died without taking the available medication.
What is Autoimmune Autonomic Ganglionopathy?
Autoimmune autonomic ganglionopathy (AAG) is an autoimmune disease in which your immune system mistakenly attacks your autonomic nervous system.
The autonomic nervous system is part of your peripheral nervous system. It controls specific involuntary body processes, such as your breathing, blood pressure or heart rate.
AAG is a form of autonomic neuropathy or dysautonomia. Autonomic neuropathies and dysautonomias are disorders of your autonomic nervous system.
Source: The Cleveland Clinic