By Brett Lackey for Daily Mail Australia
04:05 June 21, 2023, updated at 05:33 June 21, 2023
- Lily Thai will end her life on Wednesday
- New SA Laws Allow Voluntary Assisted Dying
- She will be surrounded by loved ones.
Lily Thai is spending her final hours saying goodbye to family and close friends who have gathered at her bedside as she prepares to end her own life after a long and painful battle with the disease and says she will miss “everything” about being alive. .
The 23-year-old prepares to die on Wednesday under south australianthe voluntary assisted dying laws that were introduced in January.
Lily has autoimmune autonomic ganglionopathy (AAG), an extremely rare condition in which the body’s immune system attacks the nervous system, leaving her with a steadily deteriorating quality of life since she was 17 years old.
Following a weeks-long process that required three formal written requests to end her own 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 medicine immediately after her final order with her parents nearby.
Signing the third written request last week, her devastated mother had to leave the room to regain her composure.
I feel pretty numb. I know how difficult 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 relied on my father as a caretaker to do everything for me, even the most intimate things.” she said.
Also close will be his Flinders Medical Center Laurel Hospice ward mate, Annaliese Holland, also 23, and the pair struck up a close friendship after discovering they both suffered from AAG.
Lily revealed that she wouldn’t be feeling well enough to get out of bed on Wednesday, but will spend the day relaxing while a steady stream of friends and family visit.
He added that the outpouring of support from people across the country had been heartwarming and that many old friends had reached out to reconnect, which had been “beautiful.”
She said she would miss ‘everything’ about being alive.
Lily had been able to plan parts of her funeral, saying she had chosen a “lovely location” for her burial.
A funeral is being arranged which the family deliberately wants to keep small so those closest to Lilly can say their last goodbyes.
Lily and Annaliese hope that by talking about their illness they will raise awareness about AAG so that it can be diagnosed sooner and more medical research can be done on this little-known condition.
She also hopes that people donate to the Hospital Research Foundation in his honor so that a hospice for younger people can be established in South Australia similar to the facilities in Perth and Sydney.
“Game consoles in every room, beautiful views to make it feel more like a bedroom, and nature…those things make it less clinical,” Lily said.
Friend Danika Pederzolli, 28, took Lily to the beach earlier this week.
A heartwarming snap showed the couple sitting in the back of an open ambulance as they enjoyed the ocean view and some McDonald’s fries.
Ms Pederzolli, who met Lily through a St John’s Ambulance cadet programme, said she would remember her close friend with a “vibrant attitude, a positive and warm presence”.
She has been battling health issues since she was a teenager, first diagnosed with Ehlers-Danlos syndrome by a doctor at age 17.
A year later, she contracted an upper respiratory infection that left her unable to walk, defecate, eat or drink without getting sick.
He also received treatment for a cerebrospinal fluid leak.
Lily then traveled to Sydney and finally found some relief through the expert care provided by a team of doctors at Macquarie University Hospital.
He had also seen a surgeon who specialized in patients with Ehlers-Danlos syndrome.
By this stage, his condition had deteriorated to the point that he wore a halo brace, which forms a ring around the patient’s head, preventing him from moving his head or neck while the spine is tilted.
She also had to use a nasal feeding tube as she couldn’t eat anything without getting sick, which left her tipping the scales at 40kg.
Lily underwent spinal fusion surgery and was fitted with a tube to help with stomach acid secretion.
The surgery happened in the middle of the covid pandemic, which means no visitors were allowed. She was released early because she struggled to be alone for such a long period of time.
Lily was then referred to a neuroimmunologist in Sydney, who formally diagnosed AAG.
It was then that 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 returned to Adelaide and was admitted to Flinders Medical Centre.
A spokesperson for SA Health said that “safe, accessible and compassionate voluntary assisted dying provides eligible South Australians with a terminal illness option at the end of life.”
‘Anyone participating in the voluntary assisted dying pathway can withdraw at any stage of the process.’
It has been available in South Australia since January 31 under strict eligibility criteria.
Between that date and April 30, 28 VAD permits have been issued.
Of these, 12 people died, including one who died without using the available drugs.
Discover more from PressNewsAgency
Subscribe to get the latest posts sent to your email.