They say you learn something new every day and honestly I have never in my life heard of a disease that made it impossible for you to be touched.

I remember encountering something like that in Tina Fey’s award winning sitcom 30-Rock, but it turned out the lady was faking the whole thing and I assumed a disease like that was too preposterous to be true.

But that is the situation a family in the United States are facing with their newborn daughter Kiira Kinkles, according to Yahoo. The four month old was born to Kirsti and Jason Kinkles in California; and she was born with recessive dystrophic epidermolysis bullosa, more commonly known as EB.

The condition affects only one out of 20, 000 newborns, and it causes skin to be so fragile that it can blister or even tear from the slightest bit of contact. According to her parents the only way to pick the baby up is with a soft blanket wrapped around her as a protective barrier.

Other protective measures include spending one or two hours a day individually bandaging Kiira’s fingers and toes to protect them from rubbing against each other. Her two older sisters always want to hold their sister but do not fully grasp why that is not possible.

“They say it’s the worst disease you never heard of” the baby’s mother, Kirsti Kinkles says.

There is no cure, but there is an organisation devoted to raising money for research towards a cure; The Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) – and their motto is actually the poignant line Mrs Kinkles quotes above.

It sounds like a harrowing condition to be living with, and nothing to be wished on anyone. Good luck to this family as they attempt to keep their baby alive, one day at a time.

You can learn more about EB here.