A brave young woman who will use euthanasia laws to end her life this week has shared one of her last beachside meals with a close friend.
Lily Thai, 23, is unable to move and is battling “excruciating” pain from a rare condition known as 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 scheduled to die on Wednesday through South Australia’s voluntary assistance in dying laws enacted by the state in January.
On one of her last trips away from the hospital, Lily was taken to the beach by her close friend and paramedic, Danika Pederozolli, 28.
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
The pair sat in the back of the open ambulance as they enjoyed the view of the scenic ocean and the sound of the waves together.
One photo shows Lily resting on a bed, enjoying a portion of McDonald’s fries and looking out over the golden sand and blue water in front of her.
Danika, 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’s such a positive and warm presence in your life and (such a) smart person,” she shared The advertiser.
‘I will miss her very much. Lily is just a really beautiful person, (and) having her in our lives – we’ve been very lucky to know her.’
She added that it was “pretty horrible” what Lily was going through and a situation “no young person should be in,” but said the support for her was “beautiful.”
Lily is receiving palliative care at Laurel Hospice at Flinders Medical Center in southern Adelaide and last week signed papers confirming her decision to end her life.
She has prepared for the difficult moment and she has been busy getting her affairs in order.
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, 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 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.
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 (pictured right with fellow patient and AAG patient Annaliese Holland, 23) is unable to move and battles “excruciating” pain from a rare condition known as autoimmune autonomic ganglionopathy
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.
Lily was admitted to the Laurel Hospices at Flinders Medical Center (pictured) after returning to Adelaide from Sydney
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.
Lily has asked those who wish to honor her legacy to donate to the Hospital Research Foundation. You can donate here.