The journey of an ARPKD (Autosomal Recessive Polycystic Kidney Disease) patient is characterised by the development of fluid-filled cysts in the kidneys and is often challenging from early childhood. The pathway leads from diagnostic hurdles such as imaging studies and genetic testing to a multidisciplinary approach to symptom management and supportive care. Continuous monitoring and adapting to changing healthcare needs characterise the ongoing story of people living with ARPKD and highlight the importance of resilience and collaboration with healthcare providers.