Rare disease causes California baby’s skin to blister, tear by touch

(Luboslav Tiles)

Not being able to hold one’s newborn is a tragic thought for any parent to imagine, but that’s the reality for one California couple whose child has a rare, painful skin disease, KCRA reported.

Kirsti and Jason Kinkle’s daughter, Kiira, was born Oct. 12 with a recessive dystrophic epidermolysis bullosis, a genetic skin disease that causes the skin to blister and tear from rubbing, friction, scratching or adhesive tape.

"A clothing tag or rough fabric or even me picking her up under her arm can cause blisters ," Kirsti Kinkle, of Lincoln, Calif., told KCRA. "I can't hold her hand because it's constantly bandaged. There is no skin-to-skin contact."

“This is the worst disease you’ve ever heard of,” she said.

While there is currently no cure for the disease, researchers at Stanford University and the University of Minnesota are working toward developing an antidote. The Kinkles have a meeting scheduled Friday with medical experts at Stanford’s Lucille Packard Children’s Hospital.

Now, the only way the Kinkles can pick Kiira up is with a soft blanket wrapped around her. They spend one to two hours every day wrapping each of Kiira’s fingers and toes, and bandaging her fist and feet to protect her skin from herself as well as her two older sisters.

“[Kiira’s sisters] pray every night her owies go away, but I don't think they know the severity of it,” Jason Kinkle told KCRA.

Although the Kinkles have medical insurance, their policy doesn’t cover the estimated $10,000 to $20,000 annual cost of daily at-home treatments for Kiira.

The Kinkles said they are relying on prayer, and support from family and friends, as their pillars while they face a life of not being able to hug their little one the way most parents can.

"I would never wish this on anybody, knowing she's going to live a life of pain," Kirsti said.

To spread awareness about Kiira’s condition, Kirsti has set up a webpage for her daughter. Visit KiiraKinkle.com to learn more about the disease and donate to the cause.

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