Eleni's mother is dying. Together, they're fighting for the right to choose how that happens.

Imagine your mouth taped up, except for a tiny portion on the side; speaking is impossible, breathing is a challenge.

Then imagine your tongue is partially numbed, so you can’t flick food around to swallow. Imagine your fingers are taped together so you can’t use your hands. Imagine you have a 10kg weight strapped to your forehead, so you can barely lift you head.

“Tell me how that feels, and how long you can keep going?”

That’s the question Anne Gabrielides wants New South Wales MPs to ask themselves as they consider whether to pass the Voluntary Assisted Dying Bill due to be introduced to parliament in August.

Using an iPad to speak for her, the 55-year-old mother of three last week appeared at a press conference to announce the draft bill, and offered the rest the world that heartbreaking glimpse into hers. A world in which Motor Neurone Disease has robbed her of the ability to speak, to use her hands, to sleep properly.

Over the coming months, her neurones (nerve cells) will continue to die, more of her muscles will waste and, ultimately, MND will claim her life. But with what time and strength she has left, Anne is fighting for the right to “deny this disease its last victory”, to choose her own ending, and ensure others in a similar situation can do the same.

So far, she’s managed more than 71,000 signatures on her petition, and it’s still climbing.


Standing beside her in this fight is her 20-year-old daughter, Eleni.

“Mum wants to have a peaceful end and we all want that for her as well. [MND] is traumatising enough as it is, and it has taken so much from her already,” the communications student told Mamamia.

“It’s the fairest option with this horrible disease.”

Anne and her daughter Eleni. Image: Supplied.

More than 2,000 people in Australia have MND, two of whom will die from it each day. There is no known cause, no known treatment, no known cure, and on average, patients are given just 2.5 years to live.


Eleni was in the room last July when her mother became one of those 2,000.

"That day is just flashes of memories in my head. I wouldn't be surprised if eventually it just disappears, because my mind just kind of fell away," she said.

"I don't remember anything about what the doctor said; I just remember him walking out of the room and all of us breaking down in tears. I do remember the first thing my Mum said to me, though, which is still probably the most heartbreaking thing I can think about... 'You'll need to find a replacement Mum'."

Of course, her children told her she was "being ridiculous".

Andrew Denton talks about voluntary euthanasia with Mia Freedman. Post continues below...

In the months since, Eleni has watched on as this "ridiculously awful, almost laughable" disease has denied her and her Mum their regular chats, the treasured banter about everything from boys to sex to periods that was at the centre of their enviably close relationship.

Still, the hardest to cope with, Eleni said, is the loss of the little, simple things; Anne's ability to dress herself, to put on a necklace, to chat with her husband before she falls asleep.

"These are things that trip me up emotionally the most, because they're the things you take for granted," Eleni said. "Those really basic things that you never think about. It's those things that are the hardest to let go of for her."


Knowing it's only going to get worse, and that Anne's mind will be razor-sharp through it all, is why Voluntary Assisted Dying legislation is so crucial for the Gabrielides.

Under the draft bill, terminally ill patients - like Anne - aged 25 and over would have the right to end their lives with medical help. There would be safeguards including a 48-hour cooling-off period, the right for close relatives to challenge eligibility in court, and the need for two medical practitioners to sign off on the final decision.

"It's not a game. In the end, it has nothing to with politicians, it has nothing to do with this legal change," Eleni said. "It's about my Mum and everybody else in this situation that wants to go peacefully."

Anne and Eleni have always been incredibly close. Image: Supplied.

Should the legislation pass, Anne's final moments will be hers to design. Eleni says her Mum hopes the end will be in the family's beloved Blue Mountains home, surrounded by loved ones, her favourite music playing in the background.

Until then, she plans on "milking every drop of life".

"She's incredibly brave and defiant," Eleni said of her Mum. "Actually she's always kind of hated being in the spotlight, so this whole thing has pushed her into it, but now she's taken it with two hands and is rolling with it.

"Because she knows that she doesn't have that much time left, so she's getting everything she can and giving everything she's got."

If you'd like to support Anne's cause, you can sign her petition here. If you're in New South Wales, Eleni urges you to contact your local member and encourage them to support the bill.