This baby has a disease that makes it impossible to have skin-to-skin contact

Kiira at two months old. Photos courtesy of the Kinkle family.


Parents in California are speaking out about their baby daughter’s rare genetic disorder in the hopes of raising awareness and research funds for the condition. “I never would wish this upon anyone, knowing she is going to live a life of pain,” Kristi Kinkle tells KCRA, explaining that recessive dystrophic epidermolysis bullosa (commonly called EB) makes skin-to-skin contact with her infant Kiira nearly impossible. The condition, affecting only one out of every 20,000 newborns, causes skin to be so fragile that it can blister or even tear from the slightest touch or bit of friction. It means that Kiira’s parents and sisters, ages 2 and 4, must be extremely careful about how they make any contact with the 4-month-old.

“I don’t think they get it,” Kiira’s dad, Jason, tells KCRA about the older girls. (Yahoo Parenting was unable to reach the Kinkles for comment.) “Every night they pray that her ‘owies’ go away, but I don’t think they understand the severity of it.” Kirsti explains that the only way to pick Kiira up is with a soft blanket wrapped around her as a protective barrier. She and Jason must also spend one to two hours a day individually bandaging their baby’s fingers and toes to protect them from rubbing against each other. A fund has been set up to assist the family with ongoing medical expenses, because while the Kinkles have medical insurance, but it does not cover the estimated $10,000 to $20,000 yearly cost of the daily at-home treatments.

“They say it’s the worst disease you never heard of,” Kirsti says, quoting a tagline of DEBRA, the Dystrophic Epidermolysis Bullosa Research Association of America, which is dedicated to fundraising for research in the aim of finding a cure. The organization’s executive director Brett Kopelan, of New York City, says the phrase popped into his head when his 7-year-old daughter, Rafi, was born with the disorder, and he began researching the prognosis online.






“A little piece of your heart kind of breaks every day,” Kopelan tells Yahoo Parenting, explaining how he must watch Rafi endure the daily excruciating pain that comes with bathing her blisters and wounds. “It’s hard. It’s really hard to inflict pain on your child every day. This disease is about pain.”

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