“At the beginning, I was trying to not make it too visible, but I can’t hide it any more.”

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Vulin lives with her partner of five years, Matthew, and her two teenagers, Sienna, 17 and Sage, 15. She considers herself one of the “lucky ones” to have a support system around her.

“Matt is my knight in shining armour. He’s put his career on hold for me,” she says. “He cooks all the dinners, and when I cramp – which is a lot, and it can be really painful – he will massage my forearm or hand. He does up my bra now too because I know that movement will make me cramp.”

Emma never imagined she’d be relying on her kids at this point in her life to help with everyday tasks, but says they have taken on their new role with gravitas.

“They’re really wonderful humans,” she says. “Sienna just has this strength, organising fundraisers to raise awareness of MND, she’s amazing.”

Despite their readiness to help their mum, Emma says she’s all too aware of how they’ve been affected by their new reality and tries to be strong for them.

“I think one of the hardest parts is sometimes wanting to have a really massive cry and realising that’s probably not the best thing for my kids.”

It’s not just at home that Vulin feels supported. At work, her office manager – who happens to be a professional masseuse – offers to massage her hands.

This isn’t the first health blow Emma’s had to navigate. The 44 year-old suffered a stroke at the age of 36. She recovered physically after eight months of extensive rehab, but psychologically she has never been the same.

“It changed me. That was when I said, ‘you have to do everything you can because life is short’.” And now, in the face of a terminal illness, Emma has doubled down on what’s important in life.

“I’ve realised how precious time really is. When you have people you haven’t seen for a long time reaching out and wanting to catch up, I need to politely say no,” she says. “People mean well, but I need to spend quality time with my kids and close friends.”

It’s no secret the fast-paced life of a politician is all-consuming and not for the faint-hearted, but Vulin has no desire to slow down, driven by her devotion to serve her community.

“I feel like I still have a job to do and have something to contribute. I want to advocate for those who are most vulnerable and overlooked in society. I want to make a tiny bit of difference while I still can.”

The future for Emma is uncertain. Her disease will progress, and along with that come the unknowns, but she’s determined to confront the disease head-on.

“I would like my kids to know that their mum was a fighter.”

Brooke Campbell Bayes is a journalist, producer, wife and mother to two young girls. She also has multiple sclerosis. With 49 per cent of Australians living with a chronic illness or disability, she knows she is not alone.

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