Lake Butler walk raises awareness of rare skin condition EB

LAKE BUTLER, Fla. (WCJB) - A Union County family is working to raise awareness about epidermolysis bullosa, a rare genetic condition that affects their daughter, Leah Lynch.

Community members gathered in Lake Butler for the second annual Walk for EB Awareness. The event is called “Hope in Her Footsteps.”

The walk was held in honor of Leah, who lives with epidermolysis bullosa, also known as EB.

Leah’s parents, Ashley and Richard Lynch, organized the walk to help educate the community and support other families facing the condition.

EB is a rare genetic condition that causes the skin to blister and tear easily, sometimes from everyday touch or friction.

Leah’s parents described how the condition affects her.

“She can have contractures, the esophagus, the inner organs, blisters, and wounds very easily. So she stays wrapped for protection and she’s at risk of infection. She’s a little warrior I mean, for what she goes through, it’s pretty amazing that she wakes up with that smile on her face every day,” the Lynches said.

Proceeds from the event benefit DEBRA of America, a nonprofit that provides support, education and advocacy for families affected by EB.

The family hopes the walk will continue to grow each year, helping more people understand EB and reminding families facing the condition that they are not alone.

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