Sydney Marathon runner’s priceless memento from mother before Motor Neurone Disease took her life

Evadne Janeke was running a marathon when her mother died.

The Sydneysider learned of her loss not long after she crossed the finish line in 2018.

But she had been grieving 74-year-old Maxine Hobday in stages — as is common among the loved ones of those lost to Motor Neurone Disease (MND).

“It is just the most horrific disease, because effectively your cognitive ability stays fine while your body fails around you,” Janeke told 7NEWS.com.au.

The sound of their mother’s voice was the first thing Hobday’s children mourned, even as she remained totally cognisant and able to communicate non-verbally.

Hobday was a proud woman, and being locked into a failing body brought unfathomable frustration, as people began to speak about her, rather than to her, and assuming she could not understand them at all.

“You would not wish it on your worst enemy,” Janeke said.

Janeke told 7NEWS.com.au that her mother “lost the ability to speak fairly quickly”.

But Hobday could still use her hands, and Janeke jumped on the opportunity to immortalise her mother’s signature handwriting, before that, too, disappeared.

“I said to Dad, ‘could you ask Mum if she would just write something, I will tattoo it on me ... I know her handwriting is kind of the only thing we’ve really got left’,” Janeke said.

Despite her mother’s well-known aversion to tattoos, and her father’s warning that the request wouldn’t go down well, a postcard embellished with three words soon arrived unannounced in the mail.

Hobday’s nickname for Janeke was penned in her familiar script: “My littlest hobo”.

Whether Hobday had decided upon the phrase with humour, or the hope it would not be tattooed somewhere too visible, Janeke accepted the offering.

She had to explain its backstory to her shocked tattooist, noting the connection to both her mother’s maiden name, and a 1960s Canadian TV show about a heroic, homeless dog, called The Littlest Hobo, once beloved by Janeke and her older siblings.

By the time she revealed the tattoo to her siblings, who then wanted their own handwritten memory, Hobday had lost the ability to use her hands.

“As everything disappears, its quite sad. My sister has one of her voicemails, and it’s wild because once the speech is gone, it’s gone, and you can’t remember what Mum sounds like, even though she’s still alive.”

MND — which damages the nerve cells that carry messages from our brains, through our spinal cords, to our muscles — is thought to affect about 2,752 Australians at any one time, according to MND Australia.

There is no cure for MND, and while survival time varies, the average life expectancy after an MND diagnosis is two to three years.

For Hobday, it was about 18 months.

Now Janeke is putting her running shoes on again, this time to raise funds for MND research and support for those who suffer with it.

Her older brother and sisters will also be running their own marathons in the UK, and Janeke will combine her fundraising efforts with her siblings’ to donate to the Bristol and Bath Group for MND, which supported their mum during her final months.

Jeneke will be running in the 2025 Sydney Marathon on Sunday.

35,000 runners are expected to join her for the marathon that has now officially become part of the Abbott World Marathon Majors series.

To find out more about Janeke’s fundraiser, MND, and the support needed for further research, visit the Hobday family’s Just Giving page.