Rare skin disorder never-ending battle
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“Weston was born with recessive dystrophic epidermolysis bullosa. It’s a rare hereditary skin disorder that’s incurable. His skin was very thin and fragile, and it would blister easily. Things that wouldn’t even scratch us could tear his skin.
“He wore bandages daily to protect his wounds and try to prevent new ones. We had to unwrap him, bathe him, and then rewrap him like a burn patient. It was very painful. We did it every day until the eighth grade, when we started taking Friday nights off. Then, after he got much older, we did it every other night. But even when we didn’t do a full bath and change, there were things to change daily. His arms and legs were always wrapped. His back and shoulders, and sometimes his chest, would have wounds, too.
“Trying to get him to heal was like fighting a never-ending battle. But we just did what we had to do. Sometimes that meant six-hour bandage and bath sessions. Instead of family dinners around the table, we had family bandage changes where we would spend hours talking, laughing, crying, watching TV.
“His type of EB affected his whole body, inside and out. He had surgeries to widen his esophagus because sometimes it got to where he couldn’t even swallow his own saliva.
“Now I feel like I don’t even know how we did all that and continued to work. And I don’t know how Weston was able to go through all that, continue going to school and graduate. But he did. He was very strong willed, and he kept a positive attitude. But he dreaded those bandage changes.”
— Dana Zucha
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