We may have done a bone marrow transplant to keep Kiira from blistering as much and help her heal faster, but EB is still very much a reality in our lives. Just a few months ago (pre-BMT), this is what her feet and knees endured. Though we see less of this after the BMT, yesterday she stepped on something, blistered the bottom of her foot and could not walk. I carried her wherever she wanted to go and it broke my heart watching her attempt to push her stroller when the pain was too much. EB is harsh, but Kiira pushes through with unimaginable strength and despite the pain in her foot, she made herself walk around today.
EB affects about 1 in 20,000 people and Kiira’s subtype, RDEB, affects 1-2 in a million. Though research has made enormous strides despite being so rare, we have a long way to go to find a cure. We support the work of Dr. Tolar and the team at the University of Minnesota who actively seek a cure for EB, and if you want to help find a cure for Kiira, 100% of proceeds to irefuseEB.org go toward that research.