Jessica Fein, Part 2

305|Jessica Fein, Part 2: author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes jessicafeinstories.com

My daughter Dalia taught me about courage, sweetness, patience, and love. I am who I am because of her. We were meant to be together. -Jessica Fein

Welcome to part two of my interview with Jessica Fein, author of Breath Taking: A Memoir of Family, Dreams and Broken Genes. Jess and her husband, Rob, adopted three children from Guatemala. When their daughter, Dalia, began exhibiting balance issues and speech delays, genetic testing revealed a devastating diagnosis of MERRF Syndrome, a degenerative disease that affects the mitochondria and has no cure. In this interview, Jess shares what life was like for her family, and the story is equal parts love and fear of the future. From age 9 to her death at 17, Dalia was an “eyes on patient,” which meant that either a parent or a specially trained medical professional had to have eyes on her 24/7. Dalia couldn’t swallow and required a tracheotomy, which meant she was also on a ventilator. She could not speak and was fed through a tube. Dalia couldn’t walk and required a wheelchair. As she got older and was completely bedridden, she lost her ability to move and couldn't communicate at all, including pointing, nodding, or even mouthing words. At the core of this interview is Jessica’s powerful life philosophy that “joy and sorrow can hold hands.” Says Jess: “Dalia showed me that we can be going through what feels like a horror movie and laugh and create meaning and joy. We tried to have fun in any way we could, and she was leading that charge. She wanted to be a kid, and we were going to give that to her. We all learned that it’s okay to laugh, to smile, and to be happy. The joy we created became even more powerful because of the sorrow we had.” Hit that download button as fast as you can. Jessica’s story is overflowing with the power of love. www.jessicafeinstories.com #motherhood #rarediseases #resiliency #family

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