HE BEAT CANCER TWICE AND THOUGHT THE WORST WAS FINALLY OVER — THEN DOCTORS DELIVERED A DEVASTATING MND DIAGNOSIS THAT CHANGED EVERYTHING
A Queensland family reeling from a serious health blow says public awareness around the incurable disease has allowed their children to better understand their situation.
Matt Garnar, 48, was diagnosed with motor neuron disease (MND) in March this year, a month before South Sydney Rabbitohs forward Jai Arrow announced his own MND diagnosis and the same month AFL icon Neale Daniher died from the same condition.
The Garnar family say that public awareness around the disease has helped them and their children normalise what can otherwise be a lonely and confusing time.
Matt’s wife, Hollie Garnar, 44, and their three children, Ali 15, Taj, 11, and Tilly, 9, live on the Sunshine Coast after moving from Victoria in 2022 for a sea change.
“We decided that we’d like to move to Queensland because of the weather and there was just so much more to do outside — it was fun, the kids loved it,” Hollie said.
The idyllic life they built on the coast was not something the Garnars took for granted.
Matt had survived a leukaemia diagnosis in his early 20s, only to have a serious relapse in his late 30s that required a bone marrow transplant and almost cost him his life.
“We’ve been together for 26 years now, since I think I was about 18 and Matt was 22,” Hollie said.
“When Matt was 23, that’s when he was first diagnosed with leukaemia.”
Battling through 12 months of chemotherapy and two years of maintenance treatment, Matt was eventually given the all-clear.
“And after that we tried to have kids and obviously struggled considering he had all that chemotherapy,” Hollie said.
After a failed IVF round, Hollie and Matt fell pregnant naturally with their first child, soon followed by two more.
“But then Matt had a relapse in 2017, 15 or so years after the first which was quite unusual,” she said.
“Usually if you relapse it happens, I think, within five years. So, this time around they said he had to have a bone marrow transplant.”
Fortunately, a donor was found in the US and Matt underwent a transplant a short time later.
“Our kids were pretty young at that stage, Tilly was eight months old, Taj was one and Ali had just started prep,” Hollie said.
But Matt’s body began to shut down and he suffered a cardiac arrest, which left him on life support in ICU for three weeks.
“We didn’t even know whether the resuscitation would have had any effect on his brain at that stage and, of course, it all happened over Christmas time so we had Christmas without him,” Hollie said.
The devastated young mother said he was even told by doctors to begin thinking about whether to take Matt off life support.
“But, somehow, he got through it,” she said.
Matt had a long road to recovery and needed to learn how to walk again, but eventually he came home cancer-free and thriving from the bone marrow transplant.
“I used to say Matt was not going to give up because he wouldn’t die from a lack of trying, that’s for sure,” Hollie said.
“It’s just not the way he is, he’ll fight and he did.”
However, after their world returned to normal and the family made the move interstate to begin their lives again, a new fight would come Matt’s way.
While working in garden maintenance earlier this year, Matt began experiencing weakness in his hands and arms.
Hollie said Matt also began having twitches and all-over body weakness that wouldn’t go away.
“He started doing workouts, thinking that it was going to help him. It just wasn’t doing anything,” she said.
“I don’t know why, but in the back of my mind I thought it’s a neurological issue.
“He ended up with weakness in his hands or fingers, he couldn’t open up packets and he was asking me or the kids to open up chips and things like that.”
After about three weeks when his symptoms continued to worsen, Matt went to the doctor and was subjected to a “roller coaster” of tests and scans before he was finally diagnosed with MND.
MND is a fast-moving and life-limiting neurological disease that affects the nerves controlling movement, speech, swallowing, and breathing.
There is no known cure.
“We were shocked because how can somebody, how can one person, go through so much?” Hollie said.
Hollie said after years of fighting cancer — and winning — it has been hard to accept MND won’t “give us that opportunity”.
“When you’re given this diagnosis and you’re told there’s nothing that can be done, you feel as though you want to fight,” she said.
“We’re so used to having an opportunity to fight, but we just don’t have anything to fight it with.”
Sports stars bringing awareness to MND
Hollie said she and Matt had the difficult job of telling their children about his diagnosis.
She said while their oldest child understood what was going on, the two younger children needed some extra explanation.
That is until they received help from two sports personalities.
“With everything that’s been going on in the media lately with Jai Arrow being diagnosed, they’re seeing a lot of that on TV and, of course, Neale Daniher passing away,” Hollie said.
“They listen in and ask questions and the youngest was like ‘Is that what dad has?’ and I said, ‘Yes it’s the same thing’.
“Taj was asking how old Neale was when he passed away and we explained that he wasn’t very old.”
Hollie said the discussions helped their children not only understand their dad’s condition but also helped normalise what their family was going through.
“It’s been good in a sense because it creates not just awareness for everybody else, but it creates awareness for them and somewhat normalises our situation,” she said.
With media coverage, and the push to help find a cure, Hollie said she has reached out to try to get Matt onto medical trials to “help give him some more time”.
They are also taking practical steps, including modifications to their house to help with Matt’s mobility and a special voice recording project.
“We’re actually trying to get recordings of Matt’s voice, so that we can do voice banking,” she said.
“So eventually when his voice is fully gone, he’ll still be able to communicate with us using his own voice, his own sound.”
After some dark days, Hollie said that, while there is no cure, Matt was fighting his diagnosis in his own way and acknowledged his battle with leukaemia was still a story of survival.
“It is worth celebrating that he’s lived as long as he has, that’s for sure,” she said.
“I think Matt’s main way of fighting it is to stay positive and to try to live as long as possible.”
Hollie said the couple’s mantra and their advice to others going through MND is to stay positive and to make the most of their time.
“Make the most of the time that you have and keep creating awareness, because the effect that that’s had, just through Neale Daniher and Jai Arrow, has been pretty outstanding.
“I feel as though they’re actually getting somewhere with trying to find a cure. So hopefully one day, with all the awareness, that’s exactly what will happen.”
A GoFundMe has been created to help the Garnar family with medical expenses and to help support their children’s future.
SOURCE: https://7news.com.au/news/queensland-father-beats-cancer-twice-before-devastating-mnd-diagnosis–c-22454464
