Lily spent most of her short life battling illness and pain in hospital. When The Advertiser first reported on her decision to use SA’s voluntary assisted dying laws, on June 17, she was about to end her life just days later.

Diagnosed with Ehlers Danlos Syndrome (EDS) – a disorder that mainly affects the joints, skin and walls of the blood vessels at 17 – she then lost her ability to walk, use her bowels or even eat or drink after catching a severe respiratory infection a year later in 2018.

But life wasn’t done with Lily. Sick of doctors in Adelaide who “never believed her,” she travelled to Sydney to meet with an EDS specialist.

By then, confined to a halo brace and required a nasal feeding tube because she “couldn’t keep anything down,” she weighed around 40kg.

Eventually she was diagnosed with auto-immune autonomic ganglionopathy – a rare condition, where the body’s immune system attacks the nervous system, and her neurologist said she was in multi-organ failure.

Lily’s incredible strength

Tired of the pain, of being fed through a tube, of the endless hospitals, she realised she could no longer continue with the physically painful journey ahead, having relied on her father to do everything for her.

“I realised that I can’t have any more anaesthesia, so I (couldn’t) have any more feeding tube changes (or) surgeries,” she said.

“I decided that pain was so severe it wasn’t worth it, and I just wanted to take it into my own hands.”

Returning to Adelaide in late 2021 on her 22nd birthday, to Flinders Medical Centre, Lily made friends with Annaliese Holland, 22, who also lives with AAG. The two bonded over the “life they never got to have”.

Lily’s story created a massive outpouring of love, support and tears, shining a light on the simple, incredible courage that lies behind the decision of the terminally ill to take control of their lives when their disease usually instead controls – and isolates – them.

It highlighted the tragic truth about sickness that has no cure – it renders the patient alone, even if they are surrounded by loving family and friends.

The day before Lily would escape her pain, another of her friends, Danika Pederzolli, described her as “sunshine in human form”.

The SA paramedic said she took her on a trip to the beach, where they sat in the back of an open ambulance while Lily ate Maccas, gazed out at the ocean and listened to the waves.

Throughout their friendship, which blossomed when the pair met through a St John’s Ambulance cadet program, Danika said Lily had “taught her a lot about herself” and believed her friends and family were “very lucky to know her”.

“I think it’s devastating to lose her, but I think she’s very much made the decision independently and I think it’s the right thing for her because of how difficult the last few years have been.”

Frequently visiting Lily during her time in FMC, Danika says she has been making the experience as comforting and homely as possible.

“It’s hard, no young person should be in this situation. For any person going through this, is pretty horrible,” Danika said.

The Advertiser’s first story on Lily has now been recognised with a News Award for the two journalists who spent time with her.

How Lily spent her final days

In the last days before her passing, Lily was not “well enough to leave the hospital”, and any final activities weren’t possible.

Instead, she was confined to her bed, spending her remaining moments “relaxing” as her long line of family and friends visited to bid their final farewells.

Speaking to The Advertiser days before her final moments. she said the outpouring of support from across the nation on social media had been “absolutely beautiful,” and she “really appreciates” it.

“I’ve had a lot of people reach out, which has been beautiful,” Lily said.

“Lots of people (who) I haven’t spoken to in a long time (have reached out), which has been absolutely beautiful.

“My family was very worried that we would get negative feedback, but they’re really glad to see it’s been pretty positive.”

Lily said her family was “doing the best they can given the circumstances,” as they come to terms with her departure.

She said her parents were too emotional to speak about her health journey or her difficult decision.

One of Lily’s last wishes was for funding for palliative research and one day a facility for younger people living in hospice.

“I feel like there needs to be a young people’s hospital in South Australia that replicates what they’re doing in Sydney and Perth,” Lily explained.

“Like video game consoles in every room, beautiful views to make it feel more like a bedroom and nature … those things make it less clinical.”

“Even just like a space for parents or visitors. There’s a couple of couches in here, but they’re very clinical. (So) I think it should be more like a bedroom or a hangout areas within the rooms would be good,” Danika added.

Lily ends her life, on her own terms

Lily used SA’s voluntary assisted dying laws on a Wednesday.

The family of the brave 23-year-old confirmed the news in a funeral notice in The Advertiser, saying she “passed away peacefully” at Laurel Hospice in the Flinders Medical Centre on Wednesday.

“Much loved daughter of Kate and Le. Beloved granddaughter, niece and cousin. Treasured friend to many,” the notice said.

She took her last breaths on the Wednesday afternoon, after doctors administered a fast-acting IV medication. Her parents, who have been too emotional to speak publicly about her heartbreaking health journey, notified a small group of people.

When Lily took her final breaths, Annaliese held her hand as she made a “pinky promise”.

“I pinky promised her, and I don’t ever break pinky promises, that we would cherish those last moments together,” Annaliese said at her funeral.

Lily’s final goodbye – her funeral

It was a private funeral service, with only close friends and family invited to attend the intimate ceremony.

‘Clouds’ by Zach Sobeich rang out at Centennial Park as friends, family and loved ones gathered to farewell her.

“Maybe some day I’ll see you again, we’ll float up in the clouds and we’ll never see the end,” the lyrics said – an apt goodbye from “sunshine in human form” Lily, whose profound bravery moved the nation in her final days on Earth.

Loved ones remembered Lily as tenacious and exceptionally intelligent, emotionally and academically, with a life that was large, adventurous and full of inquisitiveness.

The daughter of culinary couple Kate Sparrow and Le Tu Thai, who she had an “exceptionally close bond” with, Lily had the “unusual” opportunity to meet with the funeral director before her service.

Before her death, Lily put together a playlist of music to comfort her family and friends – with a final request that her favourite artist, Billie Eilish, be played in the hearse as she was transported to Centennial Park.

The 23-year-old also planned to have her hair turned into natural diamonds for loved ones to commemorate her.

In her coffin, she had her Scotch College blazer, a collection of meaningful jewellery – including Buddhist beads and a gold locket with her parents’ hair – a painting of her beloved cockatoo Yoshi, a collection of soft toys, a silk eye mask and a wooden cross given to her by her cardiologist.

Lily asked loved ones to remember her love of Japan, which she visited twice, and its culture of kindness, thoughtfulness and consideration that appealed to her passion for social justice and inclusivity.

Lily’s remarkable legacy

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

Despite the tragically short length of their friendship, Annaliese said it felt like they had been “friends for years,” and 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.

“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.

Annaliese’s mother Armanda Coombe 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.

Lily’s story deeply affected South Australians, including Liz Habermann whose son Rhys was diagnosed with terminal cancer and chose to end his life, aged 19, in 2017.

Voluntary assisted dying (VAD) laws had been proposed many times in SA but had not passed by that point.

“I’m just grateful that they have got that choice now,” Ms Habermann said.

“Rhys didn’t have that choice. It would have been so much kinder for everyone involved.”

Ms Habermann said Lily was brave to take control of her life, and death, and the situation she and Rhys faced was “so bittersweet”.

“They’re at the prime of their life, they shouldn’t have to be planning their deaths, they should be planning their future lives,” she said.