‘I'm not done fighting': diagnosed with MND, Victorian MP Emma Vulin still has a lot to achieve

The Guardian

8 hours ago

Emma Vulin is zipping through Victoria's parliament in her motorised wheelchair, giving us a tour of her favourite spots. There's the back right-hand corner of the library, where she hides during sitting weeks, facing the window that looks out to St Patrick's Cathedral.
There's the 45-year-old's office, in the members' annexe, opening on to a long hallway where MPs held a race the week she first brought her chair in to 'lighten the mood'.
We reach the legislative assembly – and she stops. Black grab rails have been discreetly installed across the chamber.
'They've done it for everyone else. I'm not the odd one out,' Vulin says, her voice catching. 'This is really special.'
The first set of rails were added last year, after Vulin was diagnosed with motor neurone disease (MND), a progressive condition that gradually robs people of their ability to move, speak and breathe.
As it progresses, she's begun thinking about how long she can keep serving.
But there's something she wants to do first.
'I want to speak on voluntary assisted dying,' she says.
When Vulin's family migrated to Australia from the UK, they couldn't have known the political path that lay ahead.
The family settled in Frankston, next door to Alan Griffin, who later became a federal Labor MP and a key figure in the party's socialist left faction. Griffin helped Vulin's mother get a job with a local state member, Jane Hill.
Vulin first visited parliament in the late 1980s at an event with Hill. At a barbecue, the then premier, John Cain, offered her Fanta behind her parents' backs.
'I said, 'I'm not allowed to have soft drink'. And he said, 'I'm the premier of Victoria. Yes, you can',' Vulin says.
Later, Griffin hired her mother to run his electorate office – a training ground for Labor MPs Daniel Andrews, Jill Hennessy and Julian Hill.
Vulin, though, avoided politics, working in retail, a dental company and as a veterinary nurse, but joined Griffin's team after her mother retired.
Then in 2016, at just 36, she had a stroke.
'It happened overnight, so when I got up in the morning, I was trying to get up and I fell to the floor,' she says.
Her kids, then aged nine and seven, were downstairs.
'I had to drag myself to the top of the stairs and I was trying yell out to them but the words weren't coming out properly. Eventually they heard me and my daughter rang the ambulance,' Vulin says.
Recovery was 'crap', she says, and it took eight months to walk and talk again.
She returned to work in Andrews' office, who was by then premier.
Though staffer to MP is a well-worn path, Vulin insists she wasn't chasing it. She says she only ran in Pakenham – the seat was created ahead of the 2022 election – because 'it was anyone's game'.
'Had there been a sitting member, had I had to fight someone for that seat, I wouldn't have done it,' Vulin says. 'I don't want to take someone's job.'
She won by just 307 votes and credits the win to her local ties – her kids went to school and played basketball locally, and she volunteered with the Upper Beaconsfield CFA.
'I don't think that necessarily wins every seat, but it probably helped in mine.'
Vulin had served less than half her term when she was diagnosed with MND in April 2024.
'It started as a feeling in my fingers – my hands were always numb,' she says.
A neurologist noticed something was wrong and referred her to a surgeon, who initially suspected a pinched nerve. But as her arm weakened, he realised it was more serious.
After a secondary diagnosis on Thursday 11 April, Vulin called the premier, Jacinta Allan. They released statements on the Sunday so her daughter could tell school friends on the Monday.
Then she turned her phone off.
'The next day, I turned my phone on and I couldn't believe the amount of messages. That was probably more overwhelming than diagnosis,' Vulin says.
Among them was former AFL player and coach Neale Daniher, who helped set up FightMND after his 2013 diagnosis and was named 2025 Australian of the Year.
'He said, 'Hi Emma, it's Neale Daniher, here's my number, you need to come see me',' Vulin says.
So she did. Daniher gave her blunt advice: install a bidet, knobs on the steering wheel and doors, and 'all these other practical things that other people won't tell you'.
'At the time it was so confronting but it has come in handy,' Vulin says.
A month later, she invited Daniher to parliament for a motion on FightMND and the Big Freeze, a fundraiser where celebrities and footy greats plunge into icy water during the annual king's birthday match.
Vulin will host a Big Freeze of her own at parliament on 16 June, with the deputy premier, Ben Carroll, and the opposition leader, Brad Battin, among participants.
Battin, her neighbouring MP in Berwick, has known her for years.
'When I was diagnosed he took me out for dinner near parliament and some Labor MPs came in – I was like, 'this is not what it looks like!''
Battin says they were 'both in tears' over that dinner.
'I have a lot of time for Emma and it's just one of those things in life that is so unfair,' he says. 'Why does stuff like this happen to good people?'
Following Daniher's advice, Vulin began using a wheelchair to conserve energy and brought an occupational therapist into parliament, who produced a four-page report on how to make the heritage-listed building more accessible.
'They've done everything on the list,' she says – including installing automatic toilet doors, a new gate, filling a divot in a concrete path, accessible cabinet handles and a ramp to her friend and upper house MP Harriet Shing's office.
Vulin initially refused her occupational therapist's suggestion to install rails in the chamber, saying she 'didn't want to ruin the building'.
But Trish Burrows, the secretary of parliamentary services, pushed back, telling her: 'This is not just for you, this is for the people of Pakenham … If you can't get to your seat to represent your community, then we're not the parliament of Victoria.'
They're now considering installing a ramp to the backbench for when she can no longer walk.
How long will she keep going?
'I do have days where I'm exhausted and I think, 'do I still want to do this?' Then I wake up the next day and I think, 'no, I really do have more to give'.
'Maybe it's selfish but my community is growing and I'm not done fighting for Pakenham … It's good for them to have a voice. And for me, it gives me a purpose … [Her partner] Matt's at work and the kids are at school. If I was at home, I would just sit and cry all day.'
She trains monthly on eye-gaze technology for when speech becomes difficult and plans to start using it to reply to emails.
But she wants the health minister, Mary-Anne Thomas, to bring proposed changes to voluntary assisted dying (VAD) laws to parliament now, while she can still speak on them.
'There's a timeline for me to be able to,' she says.
Her interest in VAD began soon after diagnosis, when she met Jane Morris and Andrew Denton from Go Gentle.
'They were like, 'would you like some information on this for your constituents?' and I looked at them and said, 'I've just been diagnosed with motor neurone disease, I actually want it for myself', and then I broke down in tears.'
She later learned Victoria's once-leading VAD laws had fallen behind other states and include a gag clause preventing doctors from raising it with patients – a restriction Thomas plans to scrap.
Other proposed changes include extending the life expectancy limit for non-neurodegenerative diseases from six to 12 months, removing the third assessment for neurodegenerative conditions and shortening the timeframe between VAD requests.
Faith leaders have written to Vulin, asking her not to support changes.
'I write back saying, as someone that's been personally diagnosed with a terminal, neurodegenerative illness, I've had the opportunity to speak to many, many people who are terminal or have lost people to terminal illnesses and … these changes are necessary,' Vulin says.
'There are barriers in place and I respect that everyone won't want to use it – no problem. But for those that do, it needs to be accessible.'
Vulin has also written to the federal health minister, Mark Butler, lobbying for changes to telehealth to allow VAD services, and for better support for people with MND over 65 who aren't eligible for the NDIS.
When she's not at parliament, she spends time with Matt, daughter Sienna, 18, and son Sage, 16.
Sienna recently did work experience at the Florey Institute, which researches MND.
'She's more comfortable talking about it,' Vulin says of Sienna. 'Sage doesn't, but he hugs me more.'