This Baby from California is Unhuggable, Untouchable Because of Rare Genetic Skin Disease
Touch has been known to form bonds between parents and their children, promoting growth and development in the little ones. Jason and Kirsti Kinkle won't be able to savor the experience the way other parents normally do because of a rare skin condition that renders their daughter Kiira unhuggable.
Kiira was born on Oct. 12 with a rare skin condition called recessive dystrophic epidermolysis bullosa. It's a genetic skin disease that leads to skin so sensitive that it will blister or tear from even the slightest friction. Kristi explained that a rough fabric or picking up Kiira from under her arm can give the two-month-old blisters.
"I can't hold her hand because it's constantly bandaged. There is no skin-to-skin contact," she added. To hold Kiira, Kristi would have to wrap a soft blanket around her first to form a protective barrier between the mother and her daughter.
What's worse is that there is no cure yet for EB (as the condition is commonly called). It's actually so rare that not much research has been done about it, so doctors can't really tell the Kinkles what the future holds for Kiira. The most they can do at the moment is alleviate the baby's condition and keep her as comfortable as possible.
The Kinkles have two older daughters but Kiira's sisters have not fully grasped what is happening with their sibling, simply praying every night to make her sickness go away.
There's really not much anyone can do anyway. In the meantime, Jason and Kristi continue spending an hour or two each day wrapping Kiira's toes and fingers before bandaging her feet and fists to protect her from herself.
The good news is that the Kinkles have insurance that helps pay for some of Kiira's medical bills. The bad news is that it doesn't cover the $10,000 to $20,000 yearly cost of at-home treatments the family estimated they would need for their youngest daughter.
The Kinkles are getting by with support from friends and family, but they have also launched a website to gather donations for Kiira's care. Interested individuals have the option of making monetary donations through check, credit card or PayPal or buying supplies for her directly through the baby's Amazon Wish List. People are also urged to donate to EB groups to help further research on Kiira's condition.
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