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KCK family aims to spread awareness about rare skin disorder

Posted at 5:56 PM, Nov 06, 2019
and last updated 2019-11-06 18:56:43-05

KANSAS CITY, Kan. — A baby and her family in Kansas City, Kansas, are battling a rare disease that makes her skin as delicate as a butterfly.

It's called epidermolysis bullosa, also known as EB. Research shows about 200 children per year are born with it in the United States, and there's currently no cure.

Jessi Chavarria said her 5-month-old baby girl named Josie was diagnosed with recessive dystrophic epidermolysis bullosa, which is one of the more severe types of EB, when she was born.

"I held her for about two seconds before they took her to clean her," Chavarria said. "Upon wiping her they realized her skin was tearing."

The disorder causes the skin to be so fragile that it tears and blisters with the slightest friction, so it needs constant protection.

"We have to keep hands wrapped, feet wrapped, most of her body from the neck down is wrapped," Chavarria said. "Most of it (is) for protection, some from blistering."

The process is grueling. In the morning, Chavarria spends more than an hour changing out her daughter's bandages. Just a short while later, they must be changed again.

If a blister does form, there's only so much time for it to be drained before it can become dangerous.

"It's heartbreaking, it really is," Chavarria said. "It's heartbreaking and traumatic when you have to watch your child cry and there's absolutely nothing you can do."

She has a closet stocked with medical supplies but said the equipment she needs to protect her daughter is expensive. She had to quit her job to take care of Josie and said the financial burden has been hard on her and her family.

She said one of the most challenging parts of the disease is that not many people know about it, including doctors.

"Our doctors didn't really know what it was. They're studying it," Chavarria said.

She said the family is saving up to travel to a convention in Atlanta, where they hope to speak with EB-specific doctors and get some answers.

In the meantime, the family wants the disorder's name out there for people to learn.

"The more people who know about EB, the more people who can help donate to the cause, which helps all of us families with wound care supplies," Chavarria said.

She believes getting the word out is the key to finding a cure.

The family has a GoFundMe page set up. Click here if you would like to donate.