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Breath Taking: Jessica Fein on Presence, Advocacy, and Navigating MERRF Syndrome

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Manage episode 454010620 series 3519307
Content provided by Traci Arieli. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Traci Arieli or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.

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In this episode of Comforting Closure - Conversations with a Death Doula, host Traci Arieli sits down with Jessica Fein, author of Breath Taking, to discuss her family's profound journey caring for her daughter Dalia, who was diagnosed with the rare disease MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibers). Jessica shares the emotional challenges of becoming her daughter's advocate, the process of navigating a complex medical system, and the lessons she learned about staying present.

Together, they talk about how to find moments of peace, joy, and vulnerability even during life’s most overwhelming challenges. This episode provides a look at how we can balance grief and joy, and how we are capable of more than we ever imagined.

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  continue reading

88 episodes

Artwork
iconShare
 
Manage episode 454010620 series 3519307
Content provided by Traci Arieli. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Traci Arieli or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.

I'd love to hear from you! Send me a text message.

In this episode of Comforting Closure - Conversations with a Death Doula, host Traci Arieli sits down with Jessica Fein, author of Breath Taking, to discuss her family's profound journey caring for her daughter Dalia, who was diagnosed with the rare disease MERRF syndrome (Myoclonic Epilepsy with Ragged Red Fibers). Jessica shares the emotional challenges of becoming her daughter's advocate, the process of navigating a complex medical system, and the lessons she learned about staying present.

Together, they talk about how to find moments of peace, joy, and vulnerability even during life’s most overwhelming challenges. This episode provides a look at how we can balance grief and joy, and how we are capable of more than we ever imagined.

Links/Resources:

  continue reading

88 episodes

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