Understanding EB is not easy. There are 3 subtypes and Kiira has one called Recessive Dystrophic Epidermolysis Bullosa. Since it’s a recessive gene, as parents, we each carry one gene, but have no symptoms ourselves. Kiira’s sisters are unaffected, but could be carriers. Within RDEB, there are over 500 mutations alone. The combinations are complicated and make every EB patient present differently. Kiira’s 2 mutations have been reported in one other person in the 90s and was classified severe. However, there are modifier genes that can make Kiira’s skin stronger or weaker and based on her current condition, in combination with the bone marrow transplant, we hope she is less severe. We really won’t know and trying to predict the future is impossible. We take one day at a time. Some days are great. We celebrate a day like today where Kiira had no blisters to pop. Some days are hard. Some days I’m sad or angry, but I keep holding onto my faith that God has a plan for all this. I wouldn’t wish EB on anyone, but I do wish everyone knew of EB and could donate an hour of time, a $1 to research for a cure and/or making lives easier, or a bandage to families who need them, or prayers that God will provide families with strength and comfort and doctors with the knowledge and resources to come up with a cure.
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