Baby has rare disease that makes touching impossible
One in 20,000 babies are born with a disorder called recessive dystrophic epidermolysis bullosa (EB,) a disorder that results in extreme pain from just being touched by others. Infant Kiira Kinkle’s family is opening up about how they cope with this rare and complicated illness.
“I never would wish this upon anyone, knowing she is going to live a life of pain,” Kristi Kinkle tell, her mother told KCRA.
Her skin is so fragile that even the slightest bit of friction can result in a blister or tear. This means that Kiira’s parents, and her young siblings (2 and 4,) have to interact with her in an extremely delicate manner. Kiira can only be picked up with a soft blanket, and her fingers and toes must be bandaged daily to prevent her from hurting herself.
“I don’t think they get it,” her dad Jason says about Kiira’s sisters. “Every night they pray that her ‘owies’ go away, but I don’t think they understand the severity of it.”
The cost for her care, beyond insurance, amounts to about $10,000-$20,000 a years. To help the family deal with this economic burden, they’ve set up a website where they accept donations.
“There is no cure, but doctors at Stanford and the University of Minnesota are working toward something. But everything right now is just a treatment to improve conditions, but not get rid of it,” said Kirsti.
