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Baby has ‘worst disease you’ve never heard of’

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LINCOLN, Calif. — A baby girl in California has a rare skin condition that makes skin-to-skin contact almost impossible.

Two-month-old Kiira was born with recessive dystrophic epidermolysis bullosa.

“This is the worst disease you’ve never heard of,” her mother, Kirsti Kinkle, told KCRA.

The disease causes the skin to blister from the slightest touch.

“A clothing tag or rough fabric, or even me picking her up under her arm can cause blisters,” Kinkle said. “There is no skin-to-skin contact.”

The Kinkles have to wrap a soft blanket around Kiira 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.

“There is no cure,” Kinkle said. “Everything right now is just a treatment to improve conditions but not get rid 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 that gives them what they need as they face a life of not being able to hug their daughter the way other parents can.

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