Why every family deserves paediatric palliative care | Rio’s Legacy | Ryan Fowler

In this episode of the Bee Formless™ Flow Driven CEO Podcast, I connected with Ryan Fowler, CEO and Co-Founder of Rio’s Legacy, for a deeply personal conversation about his son Rio, paediatric palliative care and the unexpected path that led him from education into leading a charity.When Rio was just 18 months old, what began with gastro became something Ryan and his wife Karen could never have imagined. They took their little boy to hospital and he never came home. Eventually their family found Bear Cottage, where Ryan’s understanding of palliative care changed completely. He had initially resisted going because it felt like giving up on his son, until he heard something: “Children come here to live, not to die.”I loved hearing Ryan talk about the seemingly little things Bear Cottage gave their family: someone offering to make a cup of tea, home-cooked meals, their four-year-old daughter Remy being able to play, a therapy dog sitting with Rio and the chance to spend Christmas together. After losing Rio in January 2018, Ryan and Karen started asking why so few families across Australia had access to this kind of care. That question became Rio’s Legacy and has taken Ryan somewhere he never expected to go. As he told me, “I didn’t sign up to be a CEO.” Today, he works across government, healthcare, business and community to advocate for greater access to paediatric palliative care, including Mounties Care Cottage in Western Sydney.We kept coming back to Ryan’s belief that every child is “fearfully and wonderfully made”, however long or short their time in this world. THE SHAPE SHIFT IN MOTIONAt the heart of this conversation was a shift in how we understand paediatric palliative care: from something Ryan initially saw as giving up, to a place where children can live and families can be families.LEARN (LETTING GO)✨ Palliative care does not mean giving up on a child.✨ A hospital is not always the only place a child can receive care.✨ Supporting a child also means holding the family around them.UNLEARN (CREATE, REIMAGINE & RESHAPE)✨ Reimagine palliative care around living, dignity and time together.✨ Reshape a system where access should not depend on where a family lives.✨ Recognise how much small acts of humanity can matter.RELEARN (TEST & IMPLEMENT)✨ Give families clearer choices and conversations around palliative care.✨ Let lived experience expose what our systems are missing.✨ Understand that leadership can find us through what we never planned to experience.ACTIVE RECOVERY (REFLECT & RESET)✨ What does caring look like when curing is no longer possible?✨ What if we saw children’s hospices as places to live, rather than places to die?✨ What can love continue to shape long after a life has ended?🌐 https://rioslegacy.org.au🎟️ A Night in Rio: https://www.mountiesgroup.com.au/a-night-in-rio💭 What could change if every Australian family facing the unimaginable had somewhere they could simply be a family?Book a Strategic Shape Shift Diagnostic to illuminate what needs to shift across leadership, business and brand, from the inside out.🔗 https://calendly.com/beeformless/strategicshapeshiftdiagnostic#beeformless #flowdrivenceo #rioslegacy #paediatricpalliativecare #bearcottage #leadership #humanity #socialimpact #love