• Episode 48: Daniel DeFabio - Menkes Disease

  • 2024/10/23
  • 再生時間： 37 分
  • ポッドキャスト

Episode 48: Daniel DeFabio - Menkes Disease

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  • 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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あらすじ・解説

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.
身体的病い・疾患 衛生・健康的な生活
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