"I had kept a journal, writing the deepest thoughts and a few of the pieces of those snippets of my writing would be shared. But I was just a mom, not a polished writer– just writing to cope with extraordinary circumstances and challenges."She would develop her craft to be able to share her daughter's heroing story and the story of their family many times over, including writing an award winning book and journal article for Health Affairs. Yurcek not only defends the important role of storytelling but also offers encouragement to the storyteller searching for their voice.
Be sure to also check-out other Patient Stories from The Global Genes Project (you can submit as well). They are currently running a unique storytelling contest, the catch (opportunity) is that you have just six words to tell your rare disease story (deadline April 15th).