Lily Thai: Inside long battle against unfair disease before South Australian died by euthanasia

A 23-year-old who used assisted dying laws to end her life wanted to become a doctor and had been researching potential treatments for her painful condition.

Lily Thai’s family announced the brave young South Australian had ‘passed away peacefully’ at Laurel Hospice at the Flinders Medical Centre last Wednesday. 

Ms Thai had been battling autoimmune autonomic ganglionopathy (AAG) – a rare condition where a person’s body attacks their own nervous system.

The debilitating illness left her unable to walk, drink or eat without being sick with the 23-year-old left in constant pain.

Her friend and ‘treatment companion’ Jessica Jane revealed Ms Thai had spent the last few years of her life desperately researching treatment options for her condition.

She revealed the 23-year-old had undergone multiple surgeries but she never lost her smile throughout the painful moments. 

Jessica Jane (pictured) wrote that she was a ‘treatment companion’ of Lily Thai

Ms Thai was a former trainee ambulance officer who wanted to work in the healthcare industry so she could also help others. 

‘Lily, if only the rest of the world could have known how incredibly whip-smart and talented you are,’ Ms Jane wrote on Facebook.

‘How you wanted to study medicine, and how you could have easily achieved it if it were not for the scourge of your illness and the immensity of your daily pain.’

In a death notice released last week, Ms Thai’s family announced she had ‘passed away peacefully’.

‘Much loved daughter of Kate and Le,’ the notice read. ‘Beloved granddaughter, niece and cousin.

‘Treasured friend to many. You may have gone from our sight but you are never gone from our hearts.’

Since the age of 17, Ms Thai’s debilitating illnesses had affected her quality of life, leaving her bedridden and unable to move. 

She was receiving palliative care at the Laurel Hospice in the weeks before her death.

Ms Thai had been not well enough to go outside in her final days and instead would remain in her bed while being comforted by her friends and family.

Ms Jane said Ms Thai brought happiness to the lives of the people around her.

She has also been living with a different kind of illness and receiving treatment alongside Ms Thai.

‘You always brightened up a room when you wheeled your chair into it, and then the absolute pure joy we all felt when you had your cervical spinal fusion,’ she said.

‘And for a period of time you could stand and walk again whilst you had your “halo” on, and how proud and tall you stood, until you couldn’t again.’

For a period of time Ms Thai could stand and walk again while she had her ‘halo’ (pictured) on

A friend of Ms Thai has written a powerful and emotional tribute (pictured) to the 23-year-old who used assisted dying laws to end her life last week after years of ‘daily pain’

Her friend revealed Ms Thai ‘kept researching potential treatments’ for the  ‘excruciating’ pain she suffered from the autoimmune disease.

Ms Jane said her friend ‘fought so hard for a future for yourself.’

‘You did not give in the first time it became terrifying and the pain became impossible and there seemed to be no answer and you did not give up the 5th time, or the 14th time,’ she said.

After years of illness, as the battles Ms Thai ‘won became smaller, and battles lost became larger,’ she still cheered on her friends from the sidelines.

Ms Jane revealed Ms Thai never lost her ‘steam’ despite facing challenges and unfairness that she should ‘have rightfully raged against’. 

‘You curled up deep inside of yourself and tucked away all of those raw and hopeful and vulnerable parts and saved them for your parents, who had never left your side,’ she said. 

‘I am truly a better person for knowing you and calling you my friend and treatment companion these past six years.

‘Always loved, and never forgotten, take a deep a relaxing breath Angel, I’ll be virtually holding your hand.’

Ms Thai was the daughter of high flying culinary couple Le Tu Thai and Kate Sparrow. 

Mr Thai is a Vietnamese refugee who became one of Adelaide’s most respected chefs. 

He and his partner Kate gained acclaim through their Nediz Tu restaurant before Mr Thai later took over the kitchen at the city’s famous Bridgewater Mill restaurant. 

One person who had been by Ms Thai’s side was her close friend and ambulance officer Danika Pederzolli, 28.

Ms Pederzolli recently took Ms Thai out to the beach, with a heartwarming snap showing the pair sitting in the back of an open ambulance while enjoying the sight of the ocean and some McDonald’s fries.

Having met Ms Thai through a St John’s Ambulance cadet program, Ms Pederzolli said she would remember her friend’s ‘vibrant attitude, positive and warm presence’.

‘She’s such a positive and warm presence in your life and (such a) smart person,’ she said. ‘She was just so happy, and she’s still like that now, she’s no different.’

Ms Pederzolli described Lily as ‘sunshine in human form’ and wrote her a heartfelt note that she gifted to her along with a teddy bear.

Since the age of 17, Ms Thai’s debilitating illnesses had affected her quality of life, leaving her bedridden and unable to move

Ambulance officer Danika Pederzolli recently took Ms Thai out to the beach, with a heartwarming snap showing the pair sitting in the back of an open ambulance while enjoying the sight of the ocean and some McDonald’s fries

Ms Thai also shared a friendship with fellow autoimmune autonomic ganglionopathy (AAG) patient Annaliese Holland, 23.

The pair wanted to raise awareness about the rare disease and shared their stories in the hopes it would lead to symptoms of other AAG patients being diagnosed sooner.

Ms Thai said her experience talking about AAG had been incredible with several people contacting her to show their support.

‘Lots of people (who) I haven’t spoken to in a long time (have been in touch), which has been absolutely beautiful,’ she said.

The medicine used to end Ms Thai’s life under new assisted dying laws in South Australia was administered using an IV drip and she died within 10 seconds.

Ms Thai (right) also shared a friendship with fellow AAG patient Annaliese Hollan (left) with the pair sharing stories about the disease in the hopes of spreading awareness