Father-of-two Ronald Hobden was young and fit and gearing up to run in the Gold Coast Marathon earlier this year.
But just a week before the race, the 35-year-old was given just six months to live.
Ronald was diagnosed with a brutal form of motor neurone disease called bulbar-onset amyotrophic lateral sclerosis (MND-BALS).
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Ronald’s partner, Anna-Louise Hobden, told 7NEWS.com.au it is “heartbreaking” to watch someone with this disease slowly deteriorate.
“He’s always been really fit but he was particularly fit when he was diagnosed,” she said.
“And now … he still looks like a healthy, fit male but he’s losing his ability to walk and to talk.
“It’s just the hardest thing to watch.”
Since being diagnosed, Ronald’s speech and body has slowly deteriorated and he now finds it difficult to hold his children, Henry, 1, and Lizzie, 3.
Anna said their “main goal” is to prolong Ronald’s life long enough so Henry can form some lasting memories of his father.
“We’re now looking at every possible angle to try to prolong his life as long as possible,” she said.
“Henry will be two in January and we really want him to have his own, independent memories of his amazing father.”
Anna said the family have also begun visiting different psychologists who specialise in MND to prepare them for the future.
“We’re trying to be as practical and prepared as possible for our children,” she said.
“Because we’re afraid of not only them growing up without a father but also … to get me ready for single parenting.”
Anna added Ronald used to do “so much” for the young family.
“From cooking and cleaning to taking the kids to daycare … he really was the MVP (most valued player) in our family,” she said.
No cure
Anna described MND as an “awful and cruel” disease and is calling for it to be included on the notifiable disease list to improve the chances of a cure being discovered.
“Because it’s fatal and there’s no cure … all the medications and treatment options available just slow its progression, they don’t ever improve it,” she said.
Ronald and Anna are looking into procedures that might help prolong Ronald’s life including the experimental MND drug edaravone, which is not yet available in Australia.
If successful, the treatment is expected to double the life expectancy of an MND patient.
However, the treatment will cost $5000 a month.
Friends of the Gunnedah family have set up a GoFundMe page to help raise money for the family.
Anna says she has been “blown away” by all the support.
“The kindness of people has really just made this a lot easier,” she said.
“Either from people who know the reality of MND or have empathy for our story.”