The voluntarily assisted dying legislation in South Australia will be used on Wednesday to facilitate Lily Thai’s death at 23.
Lily has been diagnosed with highly uncommon autoimmune autonomic ganglionopathy, which has rendered her immobile and in chronic anguish. Lily has had health problems since she was a youngster, and at 17, she was diagnosed with Ehlers-Danlos Syndrome. Later, she had an upper respiratory illness that rendered her bedridden and unable to hold down food or liquids for more than a few minutes before feeling unwell. Her health did not improve after therapy for a spinal fluid leak. She eventually made her way to Sydney, where the staff at Macquarie University Hospital treated her.
Lily’s health deteriorated to the point where she needed a halo brace and a feeding tube in her nose. She had spinal fusion surgery and had a tube inserted to aid stomach acid production. Because the operation took place during the height of the Covid epidemic, she was not permitted to have any visitors.
Her latest diagnoses were a significant lesion on the left side of her brain and multi-organ failure.
Lily stays in bed most of her time in the hospital to escape her severe pain. She has been mentally and physically bracing herself for the inevitable. She says she just cannot go on.
It would have been isolating if not for visits from loved ones and the relationship she developed with another patient, Annaliese Holland, 23.
Annaliese’s symptoms, including severe pelvic discomfort, first appeared when she was 12.
Annaliese is helping Lily through her dying days with her soothing presence.
It has been challenging for Lily’s loved ones to accept her choice to undergo assisted death voluntarily. She has spoken her final goodbyes, written emotional letters to her loved ones, and even begun making arrangements for her burial. On her memorial card, she asked that contributions be sent to The Hospital Research Foundation for palliative care research.
