![\"Shona](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/01\/b9555a6f228701394dd07153b5fbfa63069e560c.png\")
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April 27, 2026 \u2014 5:00am<\/p>\n
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Remove items from your saved list<\/a> to add more.<\/p>\n AAA<\/p>\n Jumping on the trampoline, riding bikes and playing games with your siblings are among the joys of childhood. However, for nearly half of Australian families, their reality looks very different.<\/p>\n According to the 2022 ASB national health survey, two in five Australian children live with at least one chronic health condition, ranging from asthma and mental health disorders to cancer, cardiovascular and congenital disorders.<\/p>\n While the child with the chronic health condition faces challenges, another group is also directly affected yet often overlooked: their siblings.<\/p>\n \u201cWhen a child has a complex health condition, it reshapes the entire family,\u201d says Dr Shannon Schedlich, chief executive of Siblings Australia, a national support organisation for siblings of children and adults with disability or illness.<\/p>\n \u201cParents are often navigating hospital appointments, and systems with which they are unfamiliar. Uncertainty, fear and high levels of stress, can impact their capacity, relationships, and wellbeing.\u201d<\/p>\n As a result, Schedlich says that family routines shift and roles change, often leaving very little space left for anyone else\u2019s problems.\u201cThe needs of the brothers and sisters of children with complex health conditions can be deprioritised as parents and caregivers understandably focus on keeping their siblings alive.\u201d<\/p>\n Related Article For Emma Maly, a Sydney-based registered nurse and mother of three, whose 10-year-old daughter Grace was diagnosed with the rare chronic health condition ADCY5\u2010related movement disorder (ADCY5\u2010RMD) at age three and a half, this accurately describes her and her family\u2019s situation.<\/p>\n \u201cGrace is challenged every day with unpredictable movements; it affects her whole body, so she is a full-time wheelchair user, and needs help to get out of bed in the morning, to feed, to dress, to toilet \u2013 everything,\u201d Emma says.<\/p>\n The primary carer for Grace, having given up her job to support her daughter full-time, Emma says she is \u201cacutely aware\u201d of the impact Grace\u2019s health has on her two sons, 18-year-old Will and 15-year-old Ollie.<\/p>\n \u201cMy life is shaped by love, but there\u2019s also a constant undercurrent of worry that I have that doesn\u2019t switch off,\u201d she says. \u201cIt\u2019s that guilt that their life is not simple or carefree, and that they have a sense of duty on their shoulders that you didn\u2019t wish on them; it\u2019s just part of their circumstances.\u201d<\/p>\n While Emma and her husband, Adam, try to carve out one-on-one time with their sons, Emma says it isn\u2019t always possible.<\/p>\n \u201cI try to give them each their time, but it\u2019s not always easy because Grace\u2019s needs are so great at times, and her disorder is very unpredictable,\u201d Emma says. \u201cThere is a level of uncertainty that other families don\u2019t even have to think about.\u201d<\/p>\n For Ollie, this uncertainty makes even everyday activities like meeting up with friends or taking part in extracurricular activities difficult.<\/p>\n Editor’s pick \u201cBecause Grace gets tired easily, she goes to bed early, and you can\u2019t be too loud or come home late,\u201d he says.<\/p>\n \u201cSchedules are also made around her, so when I plan something with my friends, I worry about how it\u2019s going to affect my family and Grace. It\u2019s definitely on my mind a lot because I don\u2019t want to make it harder for my parents.\u201d<\/p>\n Siobhan Rogers, practice lead at Canteen, says that although every sibling\u2019s experience is unique, Ollie\u2019s situation is commonly reported by those in similar positions.<\/p>\n \u201cSome siblings may try to be the child who does not make things harder, and hold a lot in,\u201d she says. This can also make siblings feel on the sidelines or want more information about what is happening.<\/p>\n Ollie\u2019s older brother, Will \u2013 who was eight when Grace was born and 11 when she was diagnosed \u2013 says this was the case for him, especially at the beginning.<\/p>\n \u201cIt was very confusing. I didn\u2019t really understand what was going on. My parents were very stressed, and they shielded us. The doctors wouldn\u2019t tell us [either], so we had no idea what was going on,\u201d he says.<\/p>\n Now that he\u2019s older, Will says he is now heavily involved in his sister\u2019s healthcare, taking on a more hands-on role, helping bathe, feed and toilet Grace.<\/p>\n \u201cBeing the oldest, I was expected to step up, especially now, as Grace is bigger and I can help mum lift, so she doesn\u2019t destroy her back.\u201d<\/p>\n For Will, this role means greater responsibility than that of his friends his age.<\/p>\n \u201cI\u2019m a bit more mature than all my friends because that\u2019s just been required as an early carer for a complex disorder,\u201d he says. \u201cI always have to consider my family, while my friends can just do whatever they want, whenever they want. For me, it\u2019s less carefree.\u201d<\/p>\n While Will and Ollie sometimes confide in each other or pursue escapism through video games and physical exercise, neither has sought professional support.<\/p>\n \u201cTo be honest, I feel like the support is a bit lacklustre,\u201d Will says. \u201cI didn\u2019t really know where to find support. None of the medical professionals involved with Grace ever told us.\u201d<\/p>\n Although currently limited, Schedlich says that dedicated professional support is available through external charities and non-governmental organisations such as Siblings Australia, Canteen and Drenched, for those in Will and Ollie\u2019s position.<\/p>\n \u201cSiblings Australia is the only organisation nationally focused on supporting the needs of the brothers and sisters of people with chronic illness and disability, with a range of programs and supports available across the lifespan, including peer support, counselling, and parent programs,\u201d she says.<\/p>\n \u201c[But] we are also seeing a growing awareness [from hospitals and support organisations] that \u2018family support\u2019 needs to include siblings and not just focus on supporting parents.\u201d<\/p>\n For Will and Ollie, despite the challenges, they both see positives in their circumstances.<\/p>\n \u201cThere are a lot of things that you miss out on, but there\u2019s also a lot of good that comes out of it,\u201d says Will.<\/p>\n \u201cIt was what inspired me to study medicine and has influenced the way I see the world; I\u2019m so much more empathetic, more grateful.\u201d<\/p>\n Make the most of your health, relationships, fitness and nutrition with our Live Well newsletter. Get it in your inbox<\/a> every Monday.<\/p>\n Save<\/p>\n You have reached your maximum number of saved items.<\/p>\n![\"Emma](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/04\/85fd9e1df84788d972f9e7d18daa5a0197afffc5.jpeg\")
Emma and Adam Maly and their kids, Will, Ollie and Grace race each other (a favourite past-time of Grace\u2019s) at home in Sydney.Sam Mooy<\/p>\n![\"Danny](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/04\/e2e8cf950e23260abf561f5633d7e8d7c735faf4.jpeg\")
<\/a><\/p>\n![\"Ten-year-old](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/04\/2cd25ea8912961648cbbc1827c68011b9959bd9e.jpeg\")
Ten-year-old Grace has ADCY5-related movement disorder, a rare condition characterised by involuntary movements.Sam Mooy<\/p>\n![\"Jane](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/03\/992721959e80de558f6cb82f8c6e588d82a9ff8f.jpeg\")
<\/a><\/p>\n![\"Will](\"https:\/\/www.newsbeep.com\/au\/wp-content\/uploads\/2026\/04\/dbd6bf9c7adbc713186b133bd748db118990e17f.jpeg\")
Will (right) is studying medicine, inspired by his sister Grace (centre). He and brother Ollie (left) help care for their sister now they\u2019re older.Sam Mooy<\/p>\n