Baby’s Rare Disease Makes Hugging Too Dangerous

January 10, 2015

A California couple is meeting with medical experts this week to find out if there is any hope for their 2-month-old daughter, who has a rare disease that makes a simple hug dangerous. Kiira Kinkle was born with recessive dystrophic epidemolysis bullosa, which causes her skin to blister and rupture from minor friction.

“This is the worst disease you’ve never heard of,” her mother, Kirsti Kinkle, told NBC station KCRA. “A clothing tag or rough fabric or even me picking her up under her arm can cause blisters. I can’t hold her hand because it’s constantly bandaged. There is no skin-to-skin contact.”

The Kinkles, who live in Lincoln, California, spend two hours a day individually wrapping the baby’s fingers and toes and bandaging her hands and feet. They wrap a soft blanket around her before picking her up.

On Friday, they are meeting with experts at Stanford University’s children’s hospital to talk about the latest research. “There is no cure,” Kirsti Kinkle told KCRA. “Everything right now is just a treatment to improve conditions but not get rid of it.”


— Tracy Connor


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