Baby has ‘worst disease you’ve never heard of’
LINCOLN, Calif. — A baby girl in California has a rare skin condition that makes her nearly untouchable.
Kirsti and Jason Kinkle’s daughter was born with a genetic skin disease called recessive dystrophic epidermolysis bullosa. It causes the skin to blister and even tear from rubbing or scratching.
“This is the worst disease you’ve never heard of,” her mother, Kirsti Kinkle, told KCRA.
Baby Kiira’s parents have to wrap a soft blanket around the 2-month-old just to pick her up. They spend two hours every day individually wrapping her fingers and toes before they completely cover her hands and feet to protect her from hurting herself.
“A clothing tag or rough fabric or even me picking her up under her arm can cause blisters,” she told the station. “I can’t hold her hand because it’s constantly bandaged. There is no skin-to-skin contact.”
“There is no cure,” Kinkle told the station. “Everything right now is just a treatment to improve conditions but not get rid of it.”
The Kinkles hope by sharing their story, they can raise awareness and more research can be done.
“I would never wish this on anybody, knowing she’s going to live a life of pain,” she said.
The family says they have insurance, but it does not cover the daily home treatments which can cost $10 – 20,000 a year.