Kay Henderson's quest to talk about VAD
Kay Henderson, from Coffs Harbour in NSW, wanted to document her path to Voluntary Assisted Dying, and raise awareness along the way. She succeeded in doing that, beyond her wildest expectations.
Kay, 47, had been struggling with heart complications caused by the inherited disorder Marfan syndrome, that affects connective tissue.
In pain and terminally ill, she had chosen the date, and wanted people to know why she was doing VAD.
Kay started recording videos for her TikTok account, thinking she may get a few hundred views. What followed was a huge swell of public interest, with her global followers surpassing 50,000 people by the time of her death, and one video garnering more than 9 million views.
“It blew up,’’ says Kay’s niece, Necole Macey.
“Kay’s goal was the VAD awareness, because it’s not talked about much, and it was legal in Victoria for ages but nowhere else.”
Right up until she accessed VAD on February 21, 2025, Kay was answering questions from people all over the world about assisted dying, educating them about it being a legal option for terminally ill people in NSW; and making the important distinction between VAD and suicide.
Necole has now taken over the account at Kay’s request.
“She wanted me to keep spreading the awareness and updating people,’’ Necole says.
“I thought it would die down after she went - but I’m still getting messages and emails.”
Kay was like a ‘mother figure’ for Necole, who is 11 years younger, and the pair were always close. Necole, affectionately known as 'Boog', was aware of Kay’s ongoing health struggles.
Kay had lived something of a normal life growing up despite having Marfan syndrome. In her 20s she worked in recruitment, went to clubs, had boyfriends and was married for a while. Kay never had children because the Marfan’s made pregnancy too high-risk.
“She was bubbly, outgoing, straight-talking, always up for a dress-up party, full of life,’’ Necole says.
That changed when Kay had a heart attack and subsequent open heart surgery, aged 30. One of the most serious complications of Marfan syndrome is a weakened aorta, which can cause aortic aneurysm, rupture and heart failure.
Her body was shutting down but her mind kept wanting to go on.
In 2011 Kay had more surgeries from heart complications, and she was given her first terminal prognosis, which she managed to outlive. In 2019 Kay had a major stroke and again defied doctor's expectations.
However, she suffered a speech impairment, could no longer write, needed assistance with toileting, couldn’t walk more than a few metres without being in excruciating pain, and needed regular morphine and midazolam to manage pain.
“Her quality of life really deteriorated. Her body was shutting down but her mind kept wanting to go on,’’ Necole says.
“She couldn't get the pain under control, and she was over the swelling. She couldn’t even take a shower and wash her hair.”
Kay knew about VAD. Her father had died from Motor Neurone Disease and suffered immensely, and Kay believed he also would have chosen VAD if he’d had the opportunity.
Kay considered moving to Victoria where VAD was legal but was too unwell. Then VAD became available in NSW in November 2023.
Kay kept hanging on, living with her mother in Coffs Harbour, until her health took another turn for the worse in January, 2025.
Doctors warned that her aorta was now at risk of rupturing.
She was given eight weeks to live. This time, Kay was ready.
"She was a ticking time bomb,'' Necole says.
“When she got told the news she said she didn’t want to die in hospital or a hospice ‘because it smelled like death’. She didn’t want any more intervention. She wanted to die at home.’’
Kay chose the date, Friday, 21st February, wanting to give her family and friends time to travel to Coffs Harbour.
Sydney journalist Cydonee Mardon documented Kay’s last day, where she was helped down onto the sand in a wheelchair to sit in the ocean. She shared pizza with her loved ones.
“It’s my time and I’m so glad I have the choice,'' Kay said.
Then it was time for cuddles with her cat and her mum, before the VAD team administered the substance intravenously to the strains of Kay’s chosen song, Cold Chisel’s Flame Trees.
Kay died at 1.23pm, a number she would have seen as serendipitous.
“Kay believed in numbers,’’ Necole says.
“She wasn’t religious but believed her spirit would go somewhere else after death.”
The family also found it ironic that Kay’s cremation date ended up being the 3rd of March - on what would have been her 48th birthday. The cremation was originally planned for an earlier date but got pushed back.
"I believe that was her cheeky doing,'' Necole says.
"Her body entered the world on the 3/3 and her body left the world on the 3/3 and it’s her spiritual numbers again playing a part."
Necole, who works as a specialised dementia carer, now monitors Kay’s TikTok account, which continues to grow and has passed 115,000 followers. She has now become a firm advocate for VAD after witnessing Kay’s journey.
“VAD gave her back that control. She chose her date, her time, when she was ready,’’ she says.
“It was all in her hands.’’
