“They call them the Butterfly Children,” said Kirk Brazeau, the father of the one month old baby boy who was laying in a bassinet in the neonatal intensive care unit of Mott Children’s Hospital in Ann Arbor, MI. Little Archer’s hands had tiny gauze oven mitts of sorts, protecting his tiny blistered hands. His feet where encased in miniature bandage booties because the skin on the soles had sheered off leaving burned skin beneath. Archer suffers from a rare skin disorder called epidermolysis bullosa. It causes his skin to rip like tissue paper because his body doesn’t produce the collagen needed to attach the upper layer of skin to the second layer below. It causes his skin to blister, break open and leave burn marks on his skin that heal causing debilitating scar tissue to form freezing and fusing the tissue left behind. “It’s the most horrible disease you’ve never heard of” says his father Kirk.
The pain on Kirk and Nicki Brazeau’s faces was absolutely palpable. They had hoped for a typical healthy baby boy and instead had been given a child so delicate his skin would rip like the fragile wings of a butterfly. While their faces reflected their pain, their words were filled with the courage of a warriors heart. In the one month this child had been in their life they had formed a bond and love for him that they were ready to do battle to find any treatment they could to take his pain away and perhaps cure this devastating disease. I did the story on a Wednesday, and within 15 minutes of the story airing on 13ABC, I had a call from another family living with this disease, offering help and support. By the next day there was another father who’d reached out to help this family. His 4-month old son battling the same condition.
And THAT is the power of sharing a story in a television news story. I’ve been a medical reporter for 30 years now. And if you ask me the key to doing my job it would be the ability to tell the stories of people like the Brazeau’s who are courageous enough to share the most vulnerable moment of their lives with hundreds of thousands of others. I never take for granted the guts it takes to lay your life out in front of the whole world. Sometimes there is a happy ending, other times it ends tragically.
For the Brauzeu’s there is hope! Their precious Archer is a fighter surrounded by fierce warriors. I have no doubt that his parents will go to the ends of the earth to find the best treatments the medical world has to offer. And my experience tells me that the world of medicine is changing so rapidly that there may indeed be a treatment that will profound change the course of Archer’s life and the thousands of other families that have shared his story because of his parents courage in telling it!