A young South Australian woman with a terminal illness is set to honour the legacy of her friend, who ended her life through voluntary assisted dying earlier this year.
Lily Thai was 23 years old when she died earlier this year after a battle with autoimmune autonomic gangliopathy (AAG).
In her final months, Thai connected with another girl her age who suffered from the same disease, Annaliese Holland, and the pair bonded over their shared condition.
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Before her death, Lily and Annaliese made a pinky promise to stay by each other’s side.
That’s led her to Adelaide’s City to Bay fun run, set to take place on Sunday.
Days later, Annaliese will go under the knife for spinal cord surgery, which she may never wake up from.
The operation was pushed back from Friday so she could participate in the City to Bay.
Staring down the daunting reality that the surgery could take her life, Annaliese defiantly told 7NEWS.com.au she was determined to honour her friend.
“There is a high risk of not making it, but I was determined, before that, to do something to make a difference,” she said.
She’s asking onlookers to cheer for the loved ones they have lost, as she and her mum Amanda pass them holding a banner for The Hospital Research Foundation.
The AAG researchers within are the “silent heroes,” Amanda said.
Doctors and medical professionals will be transferring hospitals and taking days from their holidays to be with Annaliese for her surgery, which cannot be pushed back any further as her spine bends and threatens her organs.
“In three months’ time, I’ll be inoperable and my heart and lungs will be crushed (by my spine),” Annaliese said.
But despite the pain ahead, Annaliese’s positivity and gratitude radiates outwards.
“When you get sick you realise we’re so rough on one another, and I think we’ve become a bit of an impatient society, and I truly think being happy and positive can change someone’s world.”
She is using the walk to raise awareness for hospices which give holistic care where medical channels have left them feeling “isolated” and “like a body”, and to publicly thank her community and the medical professionals who have stood by her for more than a decade.
One of those people is Thai, who reached out to Annaliese after she walked the City to Bay in 2022.
“She found me and messaged me and said she was in hospice,” Annaliese said.
“I went and visited her the next day.
“She sent me this beautiful text that said: You inspired me, for the first time, to leave the hospice and go to Glenelg for a day out.’
“We were the same age, same illness, and she had undergone a similar surgery, and everything was just the same, and it was just a beautiful bond.
“I pinky promised to her on the first day I met her and said I promise to hold your hand through all of this, and I’ll be there through all of it with you.”
Lily asked Annaliese to be one of the six people in the room with her when she died at the Laurel Hospice in the Flinders Medical Centre on June 21, a request which Annaliese said was an honour.
Annaliese promised Lily she would continue to raise awareness and make a legacy for Lily, to “show everybody what we have been through and the hell of it.”
Fundraising efforts during Annaliese’s last City to Bay walk were in part used to provide comfortable chairs in the hospice where Lily took her last breath, one of which has Lily’s name on a plaque.
Annaliese was fit as a young child, but started getting sick at age 11.
In addition to AAG, she has survived sepsis over 20 times, has battled Addison’s Disease, severe osteoporosis and osteonecrosis of her hips.
She was misdiagnosed for years, but the antibodies attacking her nervous system would leave her with chronic pain and failure to digest food would cause intestinal failure. She has been hooked up to Total Parenteral Nutrition (TPN) for 12 hours a night for the last eight years.
“As morbid as it sounds, if I was not to survive this surgery, I was very blessed by the Adelady’s — they surprised me with … a celebration of life party where we danced to my funeral playlist.
“I want people to remember me in a happy moment, in the way I want.
“If I don’t survive on Thursday or during the recovery, I really want people to know that I’m thankful.”