Jason and Kirsti Kinkle became parents two months ago. Due to a rare genetic disease though, the couple from Lincoln, Calif. and their two older children have not been able to show baby Kiira much physical affection.
The newborn suffers from recessive dystrophic epidermolysis bullosa, NBC News reported.
The condition makes it nearly impossible for the baby to be touched, as her skin tears and blisters from any kind of rubbing or friction.
"This is the worst disease you've never heard of," Kirsti said. "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."
Kirsti and Jason only pick Kiira up after they have carefully bandaged all of her fingers and toes, and have wrapped her in a soft blanket, the parents told NBC.
They are meeting with doctors at Stanford University on Friday to further assess the situation and try to learn more about the condition. Kirsti said there is no immediate cure for the disease.
is no cure, but doctors at Stanford and the University of Minnesota are working toward something," Kirsti said. "But everything right now is just a treatment to improve conditions, but not get rid of it."
Jason added: "It's so rare there's not a whole lot of awareness and therefore not a whole lot of money."
A person with recessive dystrophic epidermolysis bullosa requires daily treatments that can cost up to $20,000 a year. The family has medical coverage, but they do not expect every penny to be covered.
"I would never wish this on anybody, knowing she's going to live a life of pain," Kirsti said.
NBC affiliate KCRA interviewed Jason and Kirsti in their home. The broadcast can be watched here.
