Today, we farewelled Lily Thai.
Many people would know of Lily. Her brave and heartbreaking story has encapsulated much of the nation over the last couple of weeks.
Last Wednesday, at the young age of 23, she made the decision to bid farewell to a life consumed by illness and pain, accessing South Australia’s voluntary assisted dying laws.
Lily and I were in the same year at school. She was brilliant. A highly intelligent, caring, generous young person. I have considered strongly what to say, and whether to say anything at all. It is an arduous endeavour to do justice to her remarkable spirit and the immense courage she displayed throughout her life.
But Lily’s final wish was that, wherever we can, we share her story and we raise awareness of the illness that ultimately robbed her of much of her life.
Lily’s path was marred by health struggles since her teenage years, ultimately leading to a diagnosis of Ehlers Danlos Syndrome (EDS) at the age of 17. This disorder, affecting joints, skin, and blood vessels, subjected Lily to unimaginable pain and daily challenges.
In 2018, a year after her EDS diagnosis, Lily’s contracted a severe upper respiratory infection. This infection robbed her of her ability to walk, eat, and drink without falling ill. While she initially believed the deterioration was due to a spinal fluid leak, treatments failed to improve her condition, leaving doctors unable to provide a definitive diagnosis.
Driven by desperation, Lily sought out a specialised surgeon in Sydney who, for months, focused on spinal issues in EDS patients. Bound by a halo brace and reliant on a nasal feeding tube to combat her inability to keep food down, Lily weighed a mere 40 kilograms.
In May 2021, Lily underwent spinal fusion surgery and, shortly after, received a gastro jejunostomy tube to alleviate stomach acid and secretions. She was diagnosed with auto-immune autonomic ganglionopathy (AAG). Her journey to recovery was further complicated by the strict Covid-19 protocols in hospitals, leaving Lily to endure the experience alone.
Ultimately, her pain became so severe, that Lily chose to end of her own life on Wednesday 21st June.
Today, she was laid to rest, with her Scotch College blazer, a painting of her beloved cockatoo Yoshi, and soft toys, jewellery and trinkets that held a special place in her heart. Her favourite artist, Billie Eilish, was played in the hearse as she made her final journey to Centennial Park.
Lily’s close friend Annaliese Holland, who also battles the rare AAG condition, held Lily’s hand in her last moments. In a touching tribute, Annaliese promised that every June 21st would be Lily’s day, a day dedicated to raising money for charity by selling Lily’s favourite flower, lilies. She vowed to fight tirelessly against the struggles they faced at such a young age, recognising that no one should have to endure what they experienced.
Indeed, Lily requested that, in lieu of flowers, that donations be made to The Hospital Research Foundation for palliative research. She dedicated her life to encouraging support for ongoing research and advances in the field.
Lily Thai’s extraordinary journey serves as a reminder of the strength and courage exhibited by individuals battling chronic illnesses. Her decision to access voluntary assisted dying laws, while undoubtedly difficult, highlights the importance of open conversations surrounding end-of-life choices and the need for compassion and understanding.
May Lily’s legacy inspire greater awareness, empathy, and support for those facing debilitating illnesses.
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