In the two weeks that followed, Brady underwent biopsies and several tests that would conclude that he had inherited a rare genetic condition - recessive dystrophic epidermolysis bullosa or RDEB. Even in a family full of medical professionals, none had ever heard of this rare and horrifying disease. During the time we spent in the NICU, Brady was a learning opportunity for medical residents and nurses. Normal protocols were put to the test - inserting I.V.s, keeping his temperatures comfortable without any clothing that could pull his skin off. Wound care was immensely tricky. I recall a nurse holding Brady’s bare calf in efforts to stabilize his leg as he was kicking and screaming. Her face turned white when she realized that by holding his leg, the skin that covered the entire backside of his calf had sheared off in seconds.
We were overwhelmed. Not just by the daily tasks required to keep him safe and well, but also by the effort it took to get the resources we desperately needed. Home health agencies had little to no experience caring for a child with EB, and the fact that Brady was so young made them more hesitant to agree to care for him. Our private insurance company would not cover wound care supplies that would cost us upwards of $8,000 monthly. These bandages would be Brady’s only form of “treatment” and without them, he would not survive. We realized quickly that we weren’t the only people who hadn’t heard of EB, but it’s rarity also meant that our path forward would require constant education that would hopefully lead us to properly care for Brady.
Brady is now two years old, and his spirit continues to keep him smiling and laughing each day. He loves watermelon, goldfish and anything that involves his older brother Leo and dog, Clementine. He works diligently with physical therapy and his caregivers to work around the bandaging that protects his body and do the tasks most people wouldn’t think twice about doing. Perhaps most profoundly, Brady is learning to walk on his tender, fragile and often still wounded feet.
Our family keeps high hopes that Brady will be able to do most of the things that “normal” children do. We ache to think he will have times of pain that will limit his desire to even walk. We are frustrated that there are not more options for him as a young child that may prevent the scarring and internal complications that arise as EB progresses. Without a life-changing treatment or cure, these moments will be more frequent for Brady.
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