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Phoenix girl with rare skin condition making progress

Posted at 4:49 PM, Jul 18, 2018
and last updated 2018-07-19 08:59:27-04

A 9-year-old Phoenix girl is making progress, after being diagnosed with a rare genetic skin condition at birth.

Lizzy Hendrickson has epidermolysis bullosa. Those who have it are sometimes referred to as "butterfly children" because their skin is so fragile, it tears like a butterfly. 

In 2012, ABC15 first introduced viewers to Lizzy. Her legs had to constantly be wrapped in bandages because they easily formed blisters and scabs. 

However, since that time, her parents have stopped wrapping Lizzy's legs. 

"She seemed to do fine, and over time we realized if it was exposed to the air it seemed to get a little bit stronger over time," Lizzy's mother, Kristin, said. 

Lizzy still suffers from the condition, but now only relies on small patches to cover her wounds. Her father, Rob, says even when she's in pain, his daughter quickly gets back up and keeps on moving.

"It's typically 'Ow, that hurts. Can we put a patch on it? Ok, let's go,' " he said.

Rob and Kristin say because Lizzy has a milder form of EB, they are thankful she is still able to remain active by dancing, singing, or playing with her big sister, Katie. They say other children with the same condition aren't as fortunate.

"I've never met someone as tough as Lizzy," Rob said.

Since Lizzy was first diagnosed, her parents say they have since learned that there is hope and support from others. They also would like to bring awareness and acceptance to the condition.  

The family plans on attending the Debra Care Conference, which starts this Sunday in Chandler.

Debra Care is a nonprofit that provides support to the EB community.  

Right now there is no cure. There's also no FDA approved treatment. However, there is a company called ProQR that's developing a treatment for what’s called recessive dystrophic EB.

If you'd like to learn more about the conference, click here