Arlo’s health journey began in 2019 when he was diagnosed with Schimke Immuno-Osseous Dysplasia (SIOD), a rare multisystem disorder inherited in an autosomal recessive pattern. SIOD initially presents as growth failure, and while other characteristics may emerge during further evaluations, the impact on affected individuals can be profound. Unfortunately, those diagnosed with the severe early-onset form of the disorder often confront significant health complications, resulting in a mean life expectancy of just over nine years. This diagnosis came while the family was navigating a deeply painful period following the passing of Arlo’s sister, Marley, who had also been diagnosed with the same condition died in 2021, three months before Arlo underwent chemotherapy. Arlo’s diagnosis shifted their lives into a relentless cycle of vigilance and care, requiring extraordinary advocacy to secure innovative treatments available only overseas.
Mandy recalls that there were days when they felt like they were living in a hospital. When the COVID-19 pandemic hit, it only intensified the environment of caution that enveloped their home. Their lives became shaped by the need for hygiene and safety, an extension of their commitment to keeping Arlo healthy amidst his vulnerabilities. Despite the heavy circumstances, the family chose to celebrate the good days, creating cherished memories together.
Their journey has been marked by significant milestones, both triumphs and heartaches. In 2021, Arlo underwent chemotherapy and a ground-breaking bone marrow transplant using Marcus’s cells, becoming the first in Australia to have a dual transplant to address both his immune system and kidney issues. In June 2023, the family celebrated another major milestone when Arlo received a kidney transplant from Marcus, marking a turning point in their ongoing fight against SIOD. Mandy reflects on how incredible it was to see Arlo excited about receiving such a gift, a testament to his unwavering spirit.
As they move forward, Arlo continues to tackle life’s challenges with resilience. This attitude is something Mandy instils in him, emphasizing that even though life might not be perfect, they have to focus on the good things they still have. They prioritise open discussions about his health, ensuring Arlo feels empowered to ask questions and address his fears.
The family’s experiences have underscored the importance of open communication regarding Arlo’s health. They believe that empowering him with knowledge about his condition enables him to engage more fully in conversations about his care. This approach fosters a sense of control and understanding, helping Arlo navigate his challenges while cultivating emotional resilience.
Mandy stresses the importance of patient advocacy, particularly given the complexities of Arlo’s health challenges. She reflects on their experiences navigating the healthcare system and insists that parents must stand up for their children because they deserve a voice. The family’s resilience was further strengthened by their connection with experts, including doctors from Stanford University Hospital, who have provided invaluable support throughout their journey. Mandy also wishes to acknowledge Monash Children’s Hospital and The Royal Children’s Hospital. Without their commitment to both Marley and Arlo, they would have a very different story.
Relying on each other and finding joy in simple gatherings has helped the family cope with their circumstances. Uno games and nature walks are plentiful, fostering laughter and a sense of togetherness amidst uncertainty. Mandy shares that they aim to create pleasant memories because it’s the experiences that keep them going.
Reflecting on their journey, Mandy wants other families facing similar circumstances to remember that they should not give up. They must fight for their children and not hesitate to ask questions, as there’s always hope, even on the toughest days.
Through heartache, advocacy, and an unyielding spirit, Arlo and his family continue to embrace life, discovering beauty and strength in resilience. Each moment—be it in the thrill of adventure or the quiet of reflection—reminds them that every day is a treasure worth celebrating.