Terminally ill friends Lily Thai and Annaliese Holland are raising awareness on end of life care

Legacy is important to terminally ill friends Lily Thai and Annaliese Holland, who are using their last moments to passionately raise awareness about end of life care.

Lily Thai, 23, at Laurel Hospice with friend Annaliese Holland. Picture: Supplied

Legacy is important to terminally ill friends Lily Thai and Annaliese Holland.

Both 23, the pair bonded over their shared rare condition, auto-immune autonomic ganglionopathy (AAG).

Together, they wanted to raise awareness about the illness, about facing the end of their lives in what should be their prime and to allow young people to spend their final days in hospices with people their own age.

Lily’s legacy will also include sharing with the nation her wish to end her life via euthanasia, using laws recently enacted in South Australia.

She has won hearts and minds across the country with hundreds of thousands of Australians reading her story in the Sunday Mail.

Lily had plans to spend her final hours with family and friends before taking the end of her life into her own hands as early as today.

Annaliese Holland, who is terminally ill with a rare disease, has spoken of her friend Lily’s legacy. Picture: Keryn Stevens

Speaking to The Advertiser on Friday alongside Lily, Annaliese and her mother Armanda, spoke about the gruelling, heart-rending and often lonely journey of AAG.

Before meeting Lily, Annaliese said she often “hated coming into the (Flinders medical Centre hospice),” but found that “helping someone” else there has made the experience bearable.

Despite the tragically short length of their friendship, Annaliese said it felt like they had been “friends for years,” and that they had tried to “overload it and appreciate all of (it)”

“You spend so much time isolated (but) everyone deserves to have a legacy and to be spoken about,” she said.

Similar to Lily, Annaliese believes there needs to be more awareness about AAG, so symptoms can be identified earlier, and more funding can be give to hospice facilities and medical research.

“That’s why Lily and my legacy is that there’s awareness, (so) doctors can realise that not everything is simple,” Annaliese said.

“Everything is different (in hospice). It’s hard when you’re in a room, and you can hear people dying and screaming in the next room. It’s really traumatic to listen to.

“It’s really lonely when you get sick because people just don’t understand, especially at this age.”

She says those emotions are amplified when young people do not have an avenue to talk about death.

“It’s such a taboo subject and that’s what makes it scary, people don’t talk about it even if it’s a part life. But the more I talk about it, the less scared and terrified (I am),” she said.

Annaliese explained the confronting topic can often trigger parents who have a terminally ill child.

“(Some) parents that don’t want to hear it because obviously (they’re) in denial but (it) can be really hard because you just want to talk about it sometimes,” Annaliese said.

Annaliese Holland, who is terminally ill with a rare disease, has spoken of her friend Lily’s legacy. Picture: Keryn Stevens

Armanda said the pair quickly grew to love Lily, and they tried provide the Thai family with as much support as they could.

“This is really tough. We love Lily, she’s only really a new friend,” she said.

“Also, for my own daughter, I would want her to have friends like we could be for Lily.”

Armanda believes there should be a hospice facility, similar to interstate facilities, dedicated to younger people “with different types of illnesses,” to provide more “support mechanisms.”

“Anyone similar to these girls is usually people they’ve met online. They’ve made friendships with people interstate or overseas.”

Armanda says it’s “really hard” for parents to discuss the topic and it’s “something they can deny,” while also struggling to see their children sick.

“When you see your own child with pain, agony and everything they go through and struggle every day,” Armanda explained.

“(You) try and see if you can resolve whatever the medical issues are, and you hope for the best but you also don’t like to see them in pain. You go to the end of the world to do everything you possibly can to make them comfortable.”

Armanda believes “you’ve got to listen to them, respect their wishes.”

“You don’t like to see them suffering, (but) it’s comes to a point where it can be completely unbearable,” she said.

“Lily has had this condition since a teenager, so she’s battled this and received extensive care here and interstate, and she shouldn’t be forced to continue to suffer,” Ms Coombe said.

“It’s very sad, but it’s really good that she can get relief. How can anyone deny Lily release from her unbearable suffering.”