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rn The House of Weliness TV team preview the year ahead A guide to dating in the metaverse Creating a healthy relationship with your body Photo: Tina Smigietski Styling Daniel Paciocco: Hair/make-up: Julia Green, Shara Ferguson Nick Tarocash shirt. Maddox ‘T-shirt. Tarocash shorts and shoes, French Connection belt: Luke: Tarocash blazer and T-shirt. Levis jeans, Tarocash shoes; Jacqui: Viktoria & Woods cdeess. Tony Bianco heels. Bling Bar earrings: Jo: Aje dress. Christian Louboutin shoes, Bling Bar earrings. Gio. ov WORDS LIZ McGRATH hen the tousle-headed Shorter brothers Max, Will and Hudson are together at home in Ballarat. in central Victoria, there's invariably a football or cricket bat involved. Like most kids, the boys, aged 13. 12 and 9, love sports and swimming and playing games, usually with younger sister Sofia in tow. But life for the Shorter boys is different than for most. All three live with the devastating and fatal genetic disease Duchenne muscular dystrophy, a muscle- wasting condition that affects one in 3500 boys worldwide but is very rare in girls, To date, there is no cure and those with the condition usually have a life ‘expectancy in their early to mid-20s. For parents Leigh and Belinda. life ‘changed inconceivably in December 2013 when they received the devastating news that their beautiful boys Max and Will then aged 4 and 3, had the neuromuscular disease that will progressively destroy their muscle tissue, leaving them unable to walk, talk or breathe on their own. In the cruellest of blows, just 18 months later they were told Hudson also had Duchenne. “Before the boys were diagnosed. Id never even heard about Duchenne’s, it was absolutely heartbreaking and | think Leigh and | were both numb’ Belinda says. “Like all parents we had our hopes and ‘our dreams for the kids and now all that has had to change. “Sometimes we think, how much can TUNE INTO WELLNESS TV Australian health and lifestyle program The House of Wellness, brought to you by Chemist Warehouse and hosted by Luke Darcy, Jo Stanley, Dr Nick Carr and Jacqui Felgate, is on the Seven Network on Fridays and Sundays from Friday, February 17. When Save Our Sons walkers pound the pavement in Queensland this March, it will be the latest step towards finding a cure for Duchenne muscular dystrophy two people take, but it's amazing what you learn to deal with and right now we are just concentrating on giving our kids the very best life we can” That involves travelling with their young family whenever they can, and embracing life in their local community where Max. now permanently in a wheelchair. is a staunch supporter of the Geelong Cats, and Will and Hudson play with their local cricket club The family is also heavily involved with the Save Our Sons Duchenne Foundation, the peak body in Australia for those living with Duchenne and Becker muscular dystrophy. The annual WalkaDuchenne, now in its ninth year and supported by Chemist ‘Warehouse, is one of the foundation's biggest fundraisers, supporting research clinical trials, medical equipment and specialist nurses in hospitals across ‘Australia and a scholarship program and resources for affected children and their families. "Save Our Sons has done so much for Us, providing equipment like a mobility scooter for Max and a SeaDoo Seascooter Back Row L-R: Belinda Shorter, Hon Chris Bowen MP. Leigh Shorter, Hon Mark Butler MP, Hon Linda Burney MP and Hon Michael Freelander MP. Front Row L-R: Will, Hudson, Sofia and Max Shorter. to help the boys swim,” Belinda says. “They've advocated for our family at schools and in the community and helped us to connect with other famities as well as giving us access to invaluable information on all aspects of Duchenne” In 2021, the Shorter family took part in a.walk from Sydney to Parliament House in Canberra for the foundation. raising awareness and funding and asking politicians from all sides to do more to bring potentially life enhancing drugs and therapies to Australia, "Max and | got to meet Scott Morrison, who was prime minister at the time, and he was actually really nice, despite the fact he talked about rugby and Max is, football (AFL) mad’ Belinda says with a smile. “it was such a great experience for allofus. “For the kids all over the world battling Duchenne, every step forward is a step towards finding a cure and that's where all of our hopes lie”
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