so terrifying for this family .. i can’t even begin to know what it would be like to have a beautiful baby girl like Kiira, and not be able to snuggle her ..touch her… love every square inch of her .. oh my gosh …
At first glance, eight-week-old baby Kiira looks just like any other healthy baby: bright eyes, a wisp of hair and baby-soft skin.
But Kiira has a rare genetic skin condition called recessive dystrophic epidermolysis bullosa (DEB).
Her parents, Kirsti and Jason Kinkle, spend up to two hours every day individually wrapping baby Kiira’s fingers and toes so that she won’t touch herself and cause blisters and lesions.
The condition makes Kiira’s skin so fragile that skin-to-skin contact is nearly impossible.
DEB is caused by a mutation in the gene that affects the collagen in the skin, specifically the collagen7 gene, which anchors the dermis (the skin’s deeper layer) to the epidermis (the skin’s outer layer).
When the collagen protein is abnormal, the skin becomes fragile and separates easily, causing blisters and scars.
The recessive form of DEB…
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