Family says ‘worst disease you’ve never heard of’ makes newborn practically untouchable

Posted at 2:01 PM, Dec 19, 2014

PLACER COUNTY, Cali. – A California couple said it’s the worst disease you’ve never heard of.

The Kinkles said their baby has a rare skin condition that makes their 9-week-old bundle of joy almost untouchable.

The parents told KRCA their daughter was born with recessive dystrophic epidermolysis bullosa, a genetic skin disease which causes the skin to blister or even tear from rubbing, friction, scratching or even adhesive tape.

“A clothing tag or rough fabric or even me picking her up under her arm can cause blisters,”mother Kirsti Kinkle told KRCA. “I can’t hold her hand because it’s constantly bandaged. There is no skin-to-skin contact.”

She said the only way to pick up her baby is with a soft blanket wrapped around her as a protective barrier.

This couple is sharing their story in hopes it helps find a cure.

The family is meeting with medical experts at Stanford’s Children’s Hospital Friday.

University of Minnesota doctors are working to develop some kind of treatment.

MORE: See full story from KRCA