Episode 48: Daniel DeFabio - Menkes Disease
10/23/24 • 36 min
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.
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.
Previous Episode
Episode 47: Erin Paterson - Huntington's Disease
Erin opens up about discovering Huntington's disease in her family when she was in her early 30s. She talks about her father and how his outbursts and behavioral changes, often misunderstood, were early signs of the disease. Erin reflects on her own diagnosis, the emotional burden of being gene-positive, and the delicate task of caregiving while also being a mother. We also talk about Erin’s passion for writing and storytelling, particularly her books, which focus on HD, rare diseases, and patient advocacy. She emphasizes the power of storytelling in the HD community, giving a voice to patients, caregivers, and families.
The song that Erin selected is Yer Fall by Hey Rosetta.
Next Episode
Episode 49: Kerri Mauer - Myasthenia Gravis
Kerri lives with Myasthenia Gravis (MG), a rare autoimmune condition that has turned her life upside down. Through profound reflections, she shares the multifaceted impact of MG on her life, touching on themes of resilience, loss, and gratitude. Kerri describes the strength required to live with an “invisible disability” and the journey to reframe her life around moments of beauty and simplicity. This discussion with Kerri feels like a journey in itself, filled with wisdom and warmth.
The song that Kerri chose is Both Sides Now by Joni Mitchell.
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