A Queensland family grappling with a severe health crisis says increased public awareness of an incurable disease has helped their children better comprehend their situation. Matt Garnar, 48, received a diagnosis of motor neuron disease (MND) in March this year, coinciding with South Sydney Rabbitohs forward Jai Arrow revealing his own MND diagnosis and the passing of AFL legend Neale Daniher from the same condition. The Garnar family notes that heightened public discourse around MND has normalized what could otherwise be an isolating and bewildering experience.
Family's journey from Victoria to Sunshine Coast
Matt's wife, Hollie Garnar, 44, and their three children—Ali (15), Taj (11), and Tilly (9)—reside on the Sunshine Coast after relocating from Victoria in 2022 seeking a lifestyle 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 family did not take their idyllic coastal life for granted, given Matt's previous health battles.
Previous battle with leukemia
Matt had survived a leukemia diagnosis in his early 20s, only to suffer a severe relapse in his late 30s requiring a bone marrow transplant that nearly claimed 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.” After enduring 12 months of chemotherapy and two years of maintenance treatment, Matt was declared cancer-free. The couple struggled to conceive due to the chemotherapy but eventually had three children naturally after a failed IVF round.
In 2017, Matt experienced a rare relapse. “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,” Hollie explained. A donor was found in the United States, and Matt underwent the transplant. However, his body began to shut down, leading to a cardiac arrest that left him on life support in intensive care 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 recalled. Doctors even advised her to consider taking Matt off life support, but he miraculously recovered. He had to relearn how to walk but eventually returned home cancer-free.
New symptoms lead to MND diagnosis
After the family moved to Queensland, Matt began experiencing weakness in his hands and arms while working in garden maintenance. He also had persistent twitches and overall body weakness. “He started doing workouts, thinking that it was going to help him. It just wasn’t doing anything,” Hollie said. “I don’t know why, but in the back of my mind I thought it’s a neurological issue.” After three weeks of worsening symptoms, Matt visited a doctor and underwent a series of tests before being diagnosed with MND, a fast-progressing, life-limiting neurological disease affecting movement, speech, swallowing, and breathing, with no known cure.
“We were shocked because how can somebody, how can one person, go through so much?” Hollie said. She noted that after years of fighting cancer successfully, it has been difficult to accept that MND offers no opportunity for a similar fight. “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 added.
Sports stars help normalize MND for children
Hollie and Matt faced the tough task of telling their children about the diagnosis. While their oldest understood, the younger two needed more explanation—until they received help from two sports figures. “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. The children listened and asked questions, with the youngest asking if that was what their father had. Discussions about Neale Daniher's age at death helped them grasp the situation. Hollie said this awareness not only educated others but also normalized their family's experience.
Practical steps and hope for the future
Hollie has reached out to enroll Matt in medical trials to buy him more time. The family is also making practical adjustments, such as home modifications for mobility and a voice banking project to preserve Matt's voice for future communication. Despite the bleak prognosis, Hollie emphasizes celebrating Matt's survival from leukemia. “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,” she said. A GoFundMe campaign has been established to assist with medical expenses and support the children's future.
