Family's emotional message after fight against motor neuron disease

Central Queensland family's 'heartbreaking' fight against motor neuron diseaseABy Aaron Kelly Link copiedShareShare articleGraham Horstman battled motor neuron disease (MND), a devastating and incurable illness, just as he did the football field: head-on. "Graham's attitude was: 'It is what it is, we get on with it, and we move forward,' and that was just his whole outlook the whole way through," Mr Horstman's wife, Leigh, said. After receiving the diagnosis at the age of 51, Mr Horstman died six months later, leaving behind his wife, children Megan, Riley and Daine, and six grandchildren. Graham Horstman (number 8) was a fearless player on the rugby league field in central Queensland. (Supplied: Leigh Horstman) MND is a progressive and fatal neurological condition with no known cause or cure. The illness relentlessly robs a person of their strength, mobility and speech by stripping away their physical independence, leaving them feeling trapped inside, according to MND Australia. At the time of diagnosis, the Horstman family from Rockhampton felt blindsided about the life-altering impacts that were ahead. The Horstmans rallied around their much-loved husband, father and grandfather. (Supplied: Leigh Horstman) MND, which gradually restricts everyday functions such as walking, talking, swallowing and eventually breathing, is widely considered by medical experts around the world as one of the cruellest diseases. The debilitating condition has been thrust into the spotlight in recent weeks after 30-year-old NRL player Jai Arrow's shock diagnosis and the death of former AFL footballer, Australian of the Year, and MND campaigner Neale Daniher at the age of 65. Jai Arrow's MND diagnosis has shone a spotlight on the debilitating condition. (Getty Images: Mark Metcalfe) It has been two decades since the close-knit Horstman family lost the central Queensland rugby league identity and much-loved husband, father and grandfather. Ms Horstman is sharing her family's MND journey for the first time to give other families hope. "He loved nothing better than when some of his football friends would come over and they'd sit there and talk rubbish, even though he might not have contributed much [at the end]," she recalled. Signs of the disease were subtle in the beginning, Ms Horstman said. "Graham would be walking and he'd stumble; his knee would just sort of give away," she said. "He finally had some surgery and then did the whole physiotherapy rehab afterwards, but he kept saying it wasn't getting any better." Graham Horstman was a well-respected player, coach and teammate to the end. (Supplied: Leigh Horstman) There is no specific test for MND, and treatment options are also limited. After an exhaustive period of testing 700 kilometres away in Brisbane, Mr Horstman was diagnosed with MND on October 16, 2005. "By Christmas, he was using a walking frame, much to his disgust," Ms Horstman said. "It was just heartbreaking to see [Graham's decline]," Ms Horstman said. "It was tough and it was hard for the kids, and I have no doubt it's still hard for them." The FightMND charity and its annual Big Freeze day at the MCG have raised $150 million for motor neuron disease research. (Supplied: Fight MND/Fiona Hamilton) There are up to 2,800 people living with MND nationally, and every day in Australia, two people are diagnosed and two people will die with the disease. The number of deaths across Australia has tripled since 1986, and outcomes are worse for regional patients compared with those in the cities. Life expectancy after being diagnosed varies from person to person but is generally one to five years, according to MND Australia. Salma Charania, the organisation's chair of the MND Collective Clinical Care Expert Driving Team, said Australian researchers had made "leaps and bounds" in understanding MND. Salma Charania is passionate about improving the quality of care and quality of life for people with MND. (ABC Capricornia: Aaron Kelly) Dr Charania said the first Australian MND care guideline, a uniform approach to improve the care and quality of life for those living with the disease, would be "amazing" when released in 2027. The initiative, funded by FightMND, will give evidence-based scaffolding and recommendations for healthcare practitioners, carers and stakeholders. "It's such a rare disease that wasn't getting a lot of attention even 10 years ago, and it has picked up, which is great, unfortunately due to people being diagnosed or passing away in the [public] spotlight," Dr Charania said. MND Australia chief executive Clare Sullivan said "enormous research" was also underway into the genetic predisposition of the disease. Clare Sullivan says research developments are underway to help better understand the disease. (ABC News: Ian Cutmore) "We've also got a medicine that's coming online this year that's available for people who have a particular type of gene, and that medicine is staving o

Family's emotional message after fight against motor neuron disease

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