Devastated mother's desperate battle with a hospital to keep her baby son on life support - as seven-month-old boy fights rare disorder

By KYLIE STEVENS, SENIOR BREAKING NEWS REPORTER, AUSTRALIA Published: 06:43, 9 July 2026 | Updated: 06:43, 9 July 2026 A Sydney mother is locked in a desperate battle with a hospital to keep her seriously ill baby son alive and enjoy the precious time she has left with him.  Thuy Linh Phan spends every moment she has at the hospital bedside of her seven-month-old son Liam, who was recently diagnosed with Spinal Muscular Atrophy with Respiratory Distress Type 1. SMARD1 is an extremely rare, fatal inherited neuromuscular disorder which causes muscle weakness and severe breathing problems in babies. There is no cure and the condition has an average life expectancy of less than 13 months. Born six weeks premature and weighing a tiny 1.35kg, Liam has spent much of his young life in and out of hospital battling a series of health complications before he was eventually diagnosed with SMARD1. Ms Phan and her partner Hoang were recently advised of the hospital’s plans to turn off Liam’s ventilator and life support, with specialists believing the burdens of ongoing treatment now outweigh the benefits.  The couple have now requested more time with Liam, transparency, and the opportunity to seek further independent medical advice to explore all available care options before any irreversible decision is made.  While she cannot comment on legal proceedings, or decisions currently under consideration, Ms Phan vowed to continue fighting for her son. Thuy Linh Phan is fighting for more time with her son Liam, who turns eight months on Friday Liam was recently diagnosed with SMARD1, a extremely rare, fatal inherited neuromuscular disorder which causes muscle weakness and severe breathing problems in babies 'Liam remains stable and continues to receive life-sustaining treatment,' she told the Daily Mail. 'We are taking things one day at a time, cherishing every moment we have together and making sure he is surrounded by love, comfort, and his family.' They hope to one day look back knowing that they did everything they could for their son. 'Every moment of his life is precious to us,' Ms Phan said. 'As his parents, we simply want every reasonable opportunity to be carefully considered for. 'We also hope his story helps raise awareness of rare diseases and the importance of parents being involved in decisions about their children's care.' Ms Phan described Liam as the sweetest little boy who loves music, bedtime stories, cuddles, foot massages, warm baths and hearing her sing to him. 'Despite everything he has been through, he still smiles, makes eye contact, and brings so much happiness to everyone around him,' she said. Liam is the sweetest little boy who loves music, bedtime stories, cuddles, warm baths and hearing his mother sing to him Thuy and Hoang have requested more time with Liam, transparency, and the opportunity to seek further medical advice to explore all care options before any irreversible decision is made Daily Mail contacted the hospital, which said it could not comment due to ongoing legal proceedings. Ms Phan had this advice for other parents facing a similar situation. 'Never be afraid to ask questions or seek support, ask for help when you need it, and remember that your love and your voice are an important part of your child’s care,' she said. 'No family should have to face these moments alone.' An online fundraiser set up to help Liam's family cover legal, administrative and medical expenses has raised almost $25,000. A petition urging authorities to pause the planned withdrawal of Liam's life support while further advice is obtained has almost 5,000 signatures. 'Every child deserves the opportunity for all reasonable options to be considered,' it states. 'Every family deserves confidence that no stone has been left unturned before a permanent and irreversible decision is made.' An online fundraiser set up to help Liam's family cover legal, administrative and medical expenses has raised almost $25,000 'We are taking things one day at a time, cherishing every moment we have together and making sure he is surrounded by love, comfort, and his family,' Liam's mother said Liam still smiles, makes eye contact, and brings so much happiness to those around him Ms Phan is deeply grateful for the support received. 'We are overwhelmed by the kindness we have received from people all over Australia and around the world,' she said. 'During the darkest days of our lives, people have given us hope, strength, and the courage to keep going.  'We will never forget the compassion that has been shown to our family.'