Day +48: We had Kiira’s checkup yesterday and everything is looking good, so we’re just staying the course on treatment of CMV and recovering from the BMT. Her skin still looks really good too.
However, tonight my heart is heavy. A sweet baby boy, Nate Tough, passed away last week as he was getting ready to start the BMT process. He had junctional herlitz EB. Another, one of the “older” people (31) with RDEB, is alone and fighting for his life in the hospital. I hate EB for so many reasons. Yes it is a very physically painful and debilitating condition that takes lives too early, but it also leaves a wake of destruction among families, other relationships, mental health, financial stability, and every aspect of life you can think of. I’m thankful Kiira is doing well for now, but until EB is cured, no one who has EB or knows someone with EB, will go unscathed. Please keep these families in your prayers and pray for a cure.
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