Daniel’s Journey as dad- Menkes Disease

Daniel Defabio is no foreigner to being on a podcast or film, or anything because his journey as dad has meant that he wants to share his story about Lucas and Menkes disease to everyone. We jump right into how we as dads can battle with not letting our tears out, which is such a great way to start! We discuss how it is really hard for dads to find connection with other dads, especially in his case. He shares his story with such passion and love about how it was for him in the early years with Lucas, and how the diagnosis came later than he would have liked for sure. He realized that prior to having Lucas things did look differently and within that world came compassion and empathy, not just for Lucas, but for others who maybe needed it too. This conversation with Daniel Defabio is more than what I could have imagined and he is just a lovely guy. While working at Global Genes he also runs The Disorder Channel which produces films about families who live in the rare disease world and more so jump into it. https://www.thedisordercollection.com