Mormon with rare skin disease paints, sings and reaches out to others

Published: Monday, March 11 2013 5:00 a.m. MDT

He described the overwhelming feeling he had once he made his promise.

"I felt a very strong and spiritual confirmation," Taylor Hartley said. "I knew it was the Lord telling me my decision was the right one and he was pleased with me. And it is because of that experience I am able to stay positive through all of the struggles that come our way."

Taylor and Jamie Hartley, who are in their eighth year of marriage, have started a nonprofit organization called United Survivors with Epidermolysis Bullosa. The idea to start the organization came after Jamie volunteered at a summer camp.

"The camp put on by the American Academy of Dermatology was for kids and teenagers with skin disorders, so there were kids there who had EB. Since EB is not as common as other skin diseases, I wanted to have a camp specifically for kids with EB. After getting lots of ideas and help from others, we soon started our own nonprofit organization," Jamie Hartley said.

USEB's focus is to help those with EB be more self-reliant. Currently, the organization has a camp and ski retreat planned. Its future goals include starting a scholarship fund to help those with EB gain a proper education as well as building an EB house. The EB house will be a place of assistance and refuge.

Taylor Hartley recognizes the impact these efforts can have.

"Those who come to camp are very encouraged to continue to be strong," he said. "Because of how rare it is, a lot of times kids will grow up feeling alone since no one is like them and they feel different. But when they come to camp and can socialize with those who can relate, they are able to feel normal and have some fun."

Typically, people with Jamie's condition of EB only live to age 20; Jamie is 35. Since Jamie is one of the only people her age with her condition, she feels she is an example for kids and teenagers with EB.

"When I was younger, I always looked up to those older than me. I would think to myself, 'If they can do it, I can do it.' It's nice being the older one now and having kids look up to me," said Jamie Hartley.

Hartley has a website at www.jamiehartley.net where she displays the results of her artistic abilities. She started painting in March 2011 after dealing with the possibility of losing one of her arms to cancer. She has produced more than 60 works of self-taught art, ranging from flowers and birds to fantasy and outer space.

Painting is therapy for Hartley, according to her website. When painting, she is able to forget for a small moment her painful sores that cover her body.

The albums she has produced are described on her website. They can be found at Amazon.com.

The Hartleys' faith in Jesus Christ has helped them overcome challenges they otherwise wouldn't have been able to face.

"Having knowledge about the Atonement and the Resurrection helps a lot with being able to realize that this condition is temporary," Jamie Hartley said. "Someday I will have a perfect body. Knowing that makes things a lot easier."

To learn more about EB and how you can help, visit United Survivors with Epidermolysis Bullosa's organization at ebsurvivors.org.

Kylie Lewis is an intern for the Deseret News where she writes for Mormon Times and does other feature articles. She recently graduated from Brigham Young University-Idaho, receiving a bachelor's degree in communications.

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