Lily Thai enjoys one of her final meals before euthanasia in South Australia

A brave young woman who will use euthanasia laws to end her own life this week has shared one of her final meals by the beach with a close friend.

Lily Thai, 23, cannot move and battles ‘excruciating’ pain from a rare condition known as auto-immune autonomic ganglionopathy.

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

Lily is scheduled to die on Wednesday via South Australia’s voluntary assisted dying laws, which the state enacted in January.

In one of her final outings 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 own life this Wednesday, enjoyed an outing by the beach eating McDonalds with her friend and paramedic, Danika Pederozolli

The pair sat in the back of the open ambulance while enjoying the sight of the picturesque ocean and the sounds of the waves together.

A photograph shows Lily resting on a bed, enjoying a serving of Mcdonald’s fries and looking out at 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 close friend as a ‘vibrant attitude, positive and warm presence’.

‘She’s such a positive and warm presence in your life and (such a) smart person,’ she told The Advertiser.

‘I’ll miss her greatly. Lily’s 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 that ‘no young person should be in’ but said the support for her has been ‘beautiful’.

Lily is receiving palliative care at Flinders Medical Centre’s Laurel Hospice in Adelaide’s south and signed the paperwork last week confirming her decision to have her life terminated.

She has been preparing herself 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 at 17.

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

She received treatment for a spinal fluid leak, which she initially believed she had, but it didn’t improve her condition.

Lily then travelled to Sydney and eventually found some relief through expert care provided by a team of doctors at Macquarie University Hospital.

She had also visited a surgeon who specialised in patients with Ehlers-Danlos Syndrome.

By this stage, her condition had deteriorated to the point that she was wearing a halo brace – which forms a ring around the patient’s head, stopping them from moving their head or neck while their spine heels.

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

Lily had spinal fusion surgery and was fitted with a tube to help with stomach acid secretion.

The surgery occurred during the middle of the Covid pandemic, meaning she was not allowed visitors. She got discharged early as she struggled being alone for such a long period of time.

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

It was then she also discovered 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 sufferer Annaliese Holland, 23) is unable to move and battles 'excruciating' pain from a rare condition known as auto-immune autonomic ganglionopathy

Lily (pictured right with fellow patient and AAG sufferer Annaliese Holland, 23) is unable to move and battles ‘excruciating’ pain from a rare condition known as auto-immune autonomic ganglionopathy

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

She’s grappled with the heartbreaking thought that she only had a matter of time before her body gave up.

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

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

Annaliese’s symptoms had begun from the age of 12 with severe pelvic pain. 

Doctors initially believed she had endometriosis, but after treatment her symptoms still grew worse.

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

It wasn’t until she was 19 that Annaliese 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 on a feeding drip instead. 

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

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

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

Lily was admitted to Flinders Medical Centre's Laurel Hospices (pictured) after heading back to Adelaide from Sydney

Lily was admitted to Flinders Medical Centre’s Laurel Hospices (pictured) after heading back to Adelaide from Sydney

Both Lily and Annaliese say living with a terminal illness at a young age is different as you mourn the ‘life (you) never got to have’.

Annaliese is providing comfort to Lily to make her final days more bearable.

‘All I can do is brush her (Lily’s) hair or moisturise her legs. I just want her to know that I’m there and people care,’ she said.

Lily explained that it’s been difficult for her friends and family after she made the decision to go through with voluntary assisted dying. 

‘Mum (had) to step out of the room, because she found it too much, but they respect my decision, and they’d rather not see me suffer anymore,’ she said. 

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

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

Lily has asked those wishing to honour her legacy to donate to the Hospital Research Foundation. You can donate here. 

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