Breathtaking

ENERGY IN ACTION - EPISODE 109

Breath Taking

Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes. She's also an essayist, and advocate, a speaker and the host of the I Don't Know How You Do It podcast, which features guests who triumph over seemingly impossible challenges. Jessica is a working mom of three children and she's a relentless warrior in the memory of her dynamic daughter who she lost to an ultra rare mitochondrial disease, Myoclonic epilepsy with ragged red fibers (MERRF). Her work encompasses hope and humor, gift and grace, the tools that make up her personal survival kit.

EPISODE HIGHLIGHTS

What inspired you to write your book?

The first thing I wrote was about my daughter Dalia's diagnosis. I wrote a piece on my computer and I sent it to Huffington Post where it was published as an article and featured on the front page. I loved sharing in that way because so many people could relate. When we were in the hospital, I had a lot of time to write about the experience and one day I started writing more with the intention of publishing a memoir.

How did Dalia's passing affect your other two children and how has being a mother changed for you?

Losing Dalia shifted every single thing in our lives. It was so intense while we were going through it that we didn't realize how our lives were defined by what we were living through, logistically, physically, emotionally and spiritually. Our other children grew up in this intensity. They handled it, reacted to it and dealt with it in different ways from each other and in ways that continue to evolve. My youngest rarely wants to talk about it and our oldest has become an EMT which is in direct response to growing up in and sharing the responsibility of medical care. My children are who they are because of Dalia and my husband and I are also different in so many ways because of Dalia. My children are both so open, compassionate, empathetic and courageous and I know that growing up as Dalia's siblings contributes to those traits.

How are you involved with MitoAction?

I'm proud to be part of MitoAction and the incredibly important impact the organization has. I feel like I was lucky to find MitoAction early in our diagnosis journey. One of the biggest gifts we've received was that since Dalia's passing, the wish trip program was re-named to Dalia's Wish. It's a tremendous program that gives children and families the opportunity to spend a week at Give Kids The World Village and it's the trip of a lifetime.

LINKS & RESOURCES MENTIONED

Breath Taking: A Memoir of Family, Dreams, and Broken Genes

https://www.jessicafeinstories.com/book

I Don't Know How You Do It Podcast

https://www.jessicafeinstories.com/podcast

Courageous Parents Network

https://courageousparentsnetwork.org/

May 14th Book Talk with Jessica Fein

https://courageousparentsnetwork.org/events/book-talk-with-jessica-fein-breath-taking-rare-girl-in-a-world-of-love-and-loss

Give Kids The World

https://www.gktw.org/

Dalia’s Wish