Community comes out to support girl with rare skin disorder

LANCASTER, Pa.-- Bella Stern is just like most other 7-year-old girls.

"She just loves sports. She's very energetic, and she loves it," her mother Julia Stern said.

Bella lives everyday with constant pain.

"She has to do 2-3 soaks in a bathtub everyday, about 20-30 minutes to soak her skin," Julia said. "Then we have to exfoliate that skin because it doesn't exfoliate itself on its own."

Bella suffers from a disease called ichthyosis. It's a rare skin disorder that causes the skin to become dry, cracked, and scaly.

"Bella used to say, she used to say to us that nobody understands what I'm going through," her dad Brian Stern said.

"You feel alone like an outcast," Bailey Pretak said, who also suffers from the disease.

She and her mother created the Release of Butterfly Concert Tour. It goes from town to town to raise awareness for the disease and raise money for a cure, which currently there is not one.

"Cause everyone struggles with insecurities, whether they have a skin disorder or not," Pretak said.

Naturally the concert had songs and dance at Grandview United Methodist Church in Lancaster, but there was also raffle baskets and other items people could buy.

"It goes to helping to find better treatments and hopefully a cure someday for the different skin diseases that we have," Pretak said.

Julia Stern said Bella is able to connect with these people. They understand what she goes through.

"The community is so small, that you have to stick together," Hunter Steinitz said.

That sense of community is what the Sterns want to pass onto other families going through this situation.

"To have them here and to just know that they're not alone. We're grateful for that," Julia said.

If you would like to help or find out more about the Release the Butterfly Concert Tour email them at