Macca’s and a day at the beach.
It’s a simple wish for 23-year-old Adelaide woman Lily Thai before she dies.
Simple, but significant.
Ms Thai will end her own life on Wednesday through South Australia’s newly passed voluntary assisted dying laws.
Doctors will administer an IV medication that will terminate Ms Thai’s life within 10 seconds.
The young woman suffers from auto-immune autonomic ganglionopathy, a rare condition, where the body’s immune system attacks the nervous system.
Ms Thai’s conditions have left her completely bedridden and in constant pain, she told The Advertiser.
She is completely reliant on her father as a caregiver to do everything for her – “even the most intimate things”.
One of her final memories before she dies will be a poignant outing to the beach with her friend Danika Pederzolli.
The pair went out together on Monday. They ate McDonalds, gazed out at the ocean and listened to the waves.
Ms Thai’s family are shattered but they respect her decision and don’t want to see her suffer anymore.
She has spent her last day in bed with a steady stream of family and friends saying their goodbyes.
“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,” Ms Thai said.
Downward descent
Ms Thai was diagnosed with Ehlers Danlos Syndrome (EDS) when she was 17.
A year later her condition deteriorated, initially thought to be caused by a spinal fluid leak, but after undergoing treatment to fix it, she never improved and doctors were unable to 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.
By then, she was confined to a halo brace and required a nasal feeding tube because she “couldn’t keep anything down,” and weighed just 40kg.
In May 2021, she had spinal fusion surgery and, a week later, was fitted with a gastrojejunal feeding tube to vent out stomach acid and secretion.
During her rehab, hospitals were under strict Covid-19 protocols, so the young woman endured the experience alone without the comfort of visitors.
“I couldn’t stand not seeing my dad, so I got discharged early,” she said.
She later was diagnosed with auto-immune autonomic ganglionopathy.
“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.”
Meaningful friendship
Ms Thai has spent the last two years at Flinders Medical Centre’s Laurel Hospice, where she said most of her days are filled with sleep to avoid being in “excruciating pain”.
A friendship with another young woman suffering a terminal illness at the hospice, Annaliese Holland, has made Ms Thai’s time more bearable.
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,” Ms 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,” Ms 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,” Ms Holland said.
More Coverage
Ms Holland said she’s doing everything in her power to make Ms Thai’s last days in hospice more bearable.
“All I can do is brush her (Ms Thai’s) hair or moisturise her legs. I just want her to know that I’m there and people care,” she said, crying gently.
As part of her legacy, in lieu of flowers, Ms Thai is inviting donations for palliative research to The Hospital Research Foundation.
