23-year-old reveals why she's chosen to end her life
23-year-old Lily Thai has made the crippling decision to end her life.
The Adelaide native, who suffers from Ehlers Danlos Syndrome (EDS), will use recently passed voluntary assisted dying laws after signing the final paperwork a week prior.
In January 2023, South Australia legalised assisted dying with the government funnelling in $18 million over the next five years to support safe access to the service.
“I realised that I can’t have any more anaesthesia, so I (couldn’t) have any more feeding tube changes (or) surgeries,” Thai told The Advertiser.
EDS is a debilitating genetic condition which has left the 23-year-old completely bedridden and in constant pain.
It affects her joints, skin and walls of the blood vessels so severely she is reliant on her father as a caregiver to do everything for her, “even the most intimate things”.
Doctors will administer an IV medication that will terminate the young woman’s life within 10 seconds.
“I’ll no longer have any pain, I will no longer suffer with any of these issues, and I’ll finally be free of all the suffering that I have endured for so many years.”
Thai had initially thought her health deterioration was caused by a spinal fluid leak, but after undergoing treatment to fix it, her condition did not improve and doctors couldn’t give her a definitive diagnosis.
As a desperate last measure, she travelled to Sydney to meet a surgeon who “specialised in spinal issues (for) patients with EDS” when she was 21.
She was then confined to a halo brace and required a nasal feeding tube as she "couldn’t keep anything down,” and weighed just 40kg.
In May 2021, Thai had spinal fusion surgery and just a week later was fitted with a gastro Jejenul feeding tube to vent out stomach acid and secretion.
Through her rehab period, hospitals were under strict Covid-19 protocols, so Thai suffered alone without any visitors.
“I couldn’t stand not seeing my dad, so I got discharged early,” she said.
She was later diagnosed with auto-immune autonomic ganglionopathy — a rare condition where the body’s immune system attacks the nervous system.
“The neurologist said that I was in multi-organ failure, but it wasn’t until I had a severe decline after one of my surgeries, (and) when I saw my rehab doctor they found a large lesion of the left side of my brain,” she said.
“He suspected I had a type of motor neurone disease.”
Thai has spent the past two years at Flinders Medical Centre’s Laurel Hospice, where she shared that most of her days are filled with sleep to avoid being in “excruciating pain”.
Healthcare staff there granted one of her final wishes, which was to visit a beach, and so they took Thai in the back of an ambulance to the coastline.
An image (at top) shows Lily resting on a bed, enjoying her Maccas fries and looking out at the golden sand and blue water in front of her.
While at the hospice, Thai also formed a strong bond with another young woman, Annaliese Holland, who was also suffering a terminal illness at the hospice.
The pair say young people with a terminal illness often mourn the “life (they) never got to have.”
“For elderly or older people, (they) have memories to look back on to laugh about and cry about,” Holland said. “But for a young person in palliative hospice, you haven’t formed many of them.”
“You never do the normal things like going to your high school graduation,” Thai said.
“What makes me sad is that … you just want to push on, but at the same time it’s really hard because you know you won’t have babies or any of that,” Holland said.
Holland has vowed to do everything in her power to make Thai’s last days in hospice 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,” a tearful Holland said.
Thai has been able to plan parts of her own funeral and has been busy saying goodbye to family and friends.
As part of her legacy, she’s inviting donations for palliative research to The Hospital Research Foundation on her memorial card to be given to funeral attendees.
Image credit: Facebook