Hugging and cuddling your infant child is one of the most heartwarming moments in a new parent’s life. To be denied this simple pleasure is torturous for a parent, especially if even the slightest, most loving touch could cause your child intense pain and extreme discomfort.For a California couple, this very scenario is exactly what their 2-month-old daughter is experiencing. Kiira Kinkle was born with recessive dystrophic epidermolysis bullosa, or EB. This genetic skin disorder causes the skin to be extremely sensitive, fragile and easily blistered at the lightest touch or friction. Minor cuts and abrasions become chronically painful wounds and blisters that never heal and can easily become infected. Less than one infant per 1 million newborns is affected by the recessive form of this disorder, making awareness levels low and funding for research even lower. Recently, EB has seen a little more coverage in mainstream media—the Today Show shared one baby’s story this summer, and Pearl Jam’s Eddie Vedder recently created a foundation—but very few cases are broadcasted, keeping many people in the dark about the severity of this illness.With skin-to-skin contact being nearly impossible, Kiira’s parents are devastated with the conditions of their daughter’s disease. No cure is currently known so Kiira will spend the rest of her life trying to avoid pain and discomfort caused by normal everyday actions. She will always have to be fully bandaged, each finger and toe individually covered for complete protection. Describing this condition as “the worst disease you’ve never heard of,” Kiira’s mother stays strong through prayers and a loving support system.To learn more about Kiira and her condition, check out the video below and visit her website at KiiraKinkle.com. To join the fight, you can make a donation to EB research here.

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