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).
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When the collagen protein is abnormal, the skin becomes fragile and separates easily, causing blisters and scars.
The recessive form of DEB, which Kiira has, has worse symptoms than the dominant form. In fact, it is the most severe and chronic of all types of epidermolysis bullosa, according to the Epidermolysis Bullosa Clinic at the Stanford School of Medicine.
The condition even makes it difficult for the child to eat due to internal blistering in the mouth and throat, and the scarring from the blisters can cause deformities.
The Kinkles are hoping that their story will help raise awareness about research for a cure.
“This is the worst disease you’ve never heard of,” said Kirsti to KCRA. “I would never wish this on anybody, knowing she’s going to live a life of pain.”
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