Hervey Bay’s Andrews family fighting back against MND diagnosis

The wife of a father of three facing a terminal diagnosis has shared his courageous battle against the cruellest of diseases as she now faces her own health fight. SEE THE VIDEO

Damian and Jane Andrews with their boys.

Less than two years ago, Hervey Bay’s Andrews family were one like any other.

Damian, 44, a well-known carpenter of 25 years, worked hard to support his family.

His wife Jane was busy homeschooling their three sons, Ethan, 18, Lachlan, 15 and Charlie, 9, and managing their home.

Then one day, a simple symptom led Damian to get a medical appointment, never suspecting that it would lead to a diagnosis that would change their lives forever.

Damian has now been living with motor neurone disease for 19 months.

He was diagnosed on January 18, 2024.

About three months before, Jane and Damian had started to notice he was slurring his speech and wondered if he’d had a stroke.

Jane said she never thought such a simple symptom could change their whole life.

After an MRI, scarring on Damian’s brain was detected from his ongoing migraines.

But Jane felt that wasn’t a clear explanation and asked to see a neurologist.

After seeing the neurologist, Damian was sent for more tests and he was quickly diagnosed with bulbar onset MND.

Jane said she encouraged anyone who wasn’t satisfied with their diagnosis to keep pushing, as early detection was very important.

Damian Andrews is making the most of the time he had left with his family.

Upon his diagnosis he was told he needed to ring up his workplace immediately and quit his job.

“It was just after Christmas, we had absolutely no money, no nothing, wasn't expecting it to happen,” Jane said.

But any type of physical work was going to take off time from the end of Damian’s life, as his muscles would deteriorate not strengthen with exercise.

He was immediately placed on Riluzole, a medication that gives 30 per cent up to three months’ more time.

“Apart from that there’s absolutely nothing,” Jane said.

Breaking it to their children was one of the hardest parts for the couple as they explained Damian could have as little as 18 months to live.

Damian Andrews is making the most of the time he had left with his family. He is pictured with wife Jane.

They then had to tell other family and friends.

“Damian has always been healthy, he’s never been a smoker, never been a drinker, never been anything.”

For a short time there was some hope.

Damian volunteered to be part of a trial for a new drug, Triumeq, which Jane strongly believed was making a difference.

Then, due to an interim analysis showing no benefit in survival compared to placebo, the trial was discontinued.

“For Damian, it was working,” she said.

“They measure that a person with MND goes down three points in three months.

“Damian had gone down one point in nine months.”

The neurologist said the results were great, but the decision to cancel the trial, which originated in England, was out of their hands, Jane said.

Damian Andrews is making the most of the time he had left with his family.

Within a month, the family started seeing Damian’s symptoms deteriorate again.

Now 19 months in, he’s in constant pain, cannot sleep and his voice is “very slurred”.

The family had missed out on an opportunity called “voice banking”, where a program used one’s own voice instead of a robotic voice.

“Damian’s voice deteriorated that quickly that we missed out,” Jane said.

Instead, their 18-year-old son was completing the process for his dad, so when he got to the point of using the machine, he will be able to use his son’s voice.

Damian and Jane Andrews are navigating Damian's motor neurone disease diagnosis together.

Early on, the couple made the decision to share their journey.

Their Facebook page has seen the couple and their family go through all the highs and lows as they navigate the most challenging time in their lives.

The posts are incredibly varied.

There are playful family posts that show Damian making every memory he can with his wife and kids.

And sad posts, like one that shows Jane crying in her car after getting bad news.

Every post was a moment that showed what MND was like for the person who had it and for the family surrounding that person, Jane said.

Damian Andrews and his son with Bug.

Being left with no money in the wake of the diagnosis, Jane’s sister had created a GoFundMe page.

The community of Hervey Bay threw its collective support behind the family.

“We couldn’t get over it – we were just blown away by just the generosity of people that didn’t even know us.”

It wasn’t just money, it was packages, fuel vouchers, food vouchers, Jane said.

For 10 weeks, with no money coming in, the GoFundMe account kept the family going.

The city’s renowned charity, Rally for a Cause, also threw its support behind the family.

The decision to create the page showed people how much the community was helping the family, then it started going viral, Jane said.

Now they have more than 8000 followers.

Damian had wanted to do the trial not for himself but for future generations, understanding he was something of a guinea pig, documenting that journey on the Facebook page.

The family bought a three-wheel motorcycle nicknamed Bug, which they use to promote MND awareness, decked out in the colours that represent the disease.

Hervey Bay's Damian Andrews.

One of the few times Jane speaks of the time when Damian won’t be here is when she envisions his legacy raising awareness surrounding MND, which the family is determined to continue.

Driving Bug around is just one part of that legacy.

In Australia, two people die and two people are diagnosed with MND every day, but there’s little treatment available for the disease.

Jane would love to see more investment, particularly from the government, to study and fight MND.

Damian’s type of MND, bulbar onset, means the disease starts from the head down rather than the typical legs up, meaning he has a shorter lifespan.

At a recent appointment, Damian found out his lung capacity was down to 46 per cent and he would soon need regular tests and to go on oxygen while he was asleep.

It would take away his ability to eat and swallow.

“They call it one of the cruellest diseases in the world and the reason why is it doesn’t affect your brain.”

Damian Andrews with his Lego.

While the body deteriorated, the person was aware of everything, Jane said.

“He just won't give up though, he just absolutely won’t.”

Damian has a passion for Lego and has a Lego room where he spends much of his time.

“He shows people that no matter what life can throw at you, even one of the cruellest diseases, you have to keep going and you have to keep fighting.

“You can’t just sit back.”

The family, all too aware of the short amount of time left, have packed in as much in as they can.

The couple had a second wedding that included their boys and on Wednesday they will celebrate 20 years of marriage.

“We are best friends, we are each other's everything, each other’s rocks, always have been.”

The couple met by chance when they “smashed into each other” when Jane was walking out of a petrol station.

Three weeks later they were each at the movies with friends when Jane turned around and crashed into Damian again, sending popcorn flying.

“From that moment on, we’ve been together for 25 years.”

Jane said she was incredibly proud of her boys and how they’d pulled together in the wake of their dad’s diagnosis.

Jane herself is facing her own health struggles, but knows she’ll get through it with the support of her family.

She’s hoping one day the Australian Government will commit to joining the fight to find a way to treat the disease.

Until then, the family is committed to doing what it can to raise awareness and fight back against MND.

Jane said they were inspired by Damian’s willingness to fight and to use Bug to bring attention to the cause.

“He’s the most selfless person, he’d give his shirt off his back to a stranger,” Jane said.

“He’ll ride until he dies, that’s what he says.”

Originally published as Hervey Bay’s Andrews family fighting back against MND diagnosis