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Episode 48: Daniel DeFabio - Menkes Disease
Oct 23 2024
Length: 37 mins
Podcast

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Episode 48: Daniel DeFabio - Menkes Disease

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Summary
In this heartfelt episode, Daniel opens up about his journey with his son, Lucas, who was diagnosed with Menkes disease, a rare genetic disorder. Daniel shares the emotional challenges, personal growth, and love that shaped his family's experience. He discusses the need to adjust expectations as a parent, from the small things like waiting nine years for Lucas to grab his finger, to facing the reality that Lucas' life would be short. The podcast touches on the emotional rollercoaster of caring for a child with a life-limiting illness, but also celebrates the joy Lucas brought to their lives. Daniel’s reflections are filled with warmth, sorrow, and lessons learned from his son’s light.
The song that Daniel chose is Starlight by Muse.

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