Advertisement Rare disease makes Lincoln baby almost untouchable Mother: This is the worst disease you've never heard of Share Shares Copy Link Copy

On Oct. 12 at 6:14 p.m., Kirsti and Jason Kinkle welcomed their daughter, Kiira, into the world.By Oct. 13, they learned their daughter had a rare disease that makes skin-to-skin contact almost impossible.Watch report: Placer County couple hopes for cure for untouchable baby"This is the worst disease you've never heard of," Kirsti Kinkle said.The Kinkles said their daughter was born with recessive dystrophic epidermolysis bullosa, a genetic skin disease that causes the skin to blister or even tear from rubbing, friction, scratching or even adhesive tape, Kirsti Kinkle said."A clothing tag or rough fabric or even me picking her up under her arm can cause blisters ," Kirsti Kinkle said. "I can't hold her hand because it's constantly bandaged. There is no skin-to-skin contact."Kirsti Kinkle explained that the only way to pick up her baby is with a soft blanket wrapped around her as a protective barrier.So now, as Kiira sways in a swing under the stockings and next to the Christmas tree inside a Lincoln home, her parents are bracing for a meeting with medical experts at Stanford's Lucille Packard Children's Hospital on Friday."There is no cure, but doctors at Stanford and the University of Minnesota are working toward something," Kirsti Kinkle said. "But everything right now is just a treatment to improve conditions, but not get rid of it."The Kinkles are sharing their story in hopes of raising awareness about the disease with the hope that it will lead to greater funding for research of a cure."It's so rare there's not a whole lot of awareness -- and therefore, not a whole lot of money," Jason Kinkle said.In the meantime, the Kinkles said they will continue to spend an hour to two hours every day individually wrapping each of Kiira's fingers and toes and then bandaging her fist and feet to protect her skin from herself as well as her two older sisters."I don't think they get it," Jason Kinkle said. "They pray every night her owies go away, but I don't think they know the severity of it."The Kinkles said they have medical insurance, but it does not cover the estimated $10,000 to $20,000 yearly cost of the daily at-home treatments.They said it is the support of friends and family as well as constant prayer that gives them the emotional and physical support they need as they face a life of not being able to hug their daughter the way most every parent can."I would never wish this on anybody, knowing she's going to live a life of pain," Kirsti Kinkle said.To learn more and receive updates about Kiira's condition, Kirsti set up a webpage at KiiraKinkle.com.