Christie Zink

I am a mother, photographer and a passionate advocate. It has been an interesting and wonderful journey to get here, to this role of advocate. Two years ago, I had never before heard of EB: Epidermolysis Bullosa. Then the story of a little boy named Tripp as told through the words of his mother, Courtney Roth captivated me. I stumbled upon her blog and spent an entire night reading about his first two years of life with EB. Starting from the beginning, in one night I watched a baby turn in to a happy and incredibly bright little boy, as EB ravaged his body at the same time. As a mom of three children, Tripp’s story touched my heart deeply. From that next morning on, my path would never be the same. When I embarked on this journey I was never prepared for the ways in which my heart would be touched, how my life would never be the same. This goes beyond a mother’s beautiful and poignant blog about her son’s heroic fight against a disorder that had no cure. Tripp was more than pictures and videos, he was a little boy and he was suffering in agony every day. This agony is one that is unfathomable to most of us…it is a suffering that no child or adult should ever have to endure…ever. I will never forget his trembling in anxiety, his tears, and the reality of his pain. It is forever with me and it is why I am so passionate about raising awareness and supporting research for a cure.