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

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

Taylor Hartley and his wife, Jamie, who has a rare skin condition called epidermolysis bullosa, have started a nonprofit organization to help kids and teenagers with EB become more self-reliant.

Provided by Taylor Hartley

Imagine being a child with a condition where you are as fragile as a butterfly's wings. On the outside, physical wounds prevent you from normal daily activities enjoyed by other children. Yet on the inside, your dreams are the same as any other child who loves, plays, learns and grows despite the pain and impediment caused by your condition.

This is what Jamie Hartley, a member of The Church of Jesus Christ of Latter-day Saints from Alpine, went through during her childhood, and she continues to live with her condition.

Epidermolysis bullosa is a rare genetic skin disease that causes the skin to be so fragile that even the slightest friction can cause blistering inside and outside the body. Severe forms of EB cause patients to live with constant pain and scarring and eventually can cause disfigurement, disability and, often, early death. Currently, there is no cure for EB. Treatment consists of daily wound care and bandaging.

One of the rarest forms of EB is known as recessive dystrophic. This is the condition Hartley was born with. In this form, the faulty genes are involved in the production of a type of collagen, a strong protein in the fibers that hold the deepest, toughest layer of your skin together. As a result, the fibers are either missing or nonfunctional, according to the Mayo Clinic. It is estimated that only 1.5 people in a million have what Hartley has.

From her condition, Hartley's esophagus has also been affected, causing her to have a softer voice than normal. She has also battled skin cancer and has dealt with those difficulties for the past 13 years.

These challenges have caused her to struggle with maintaining a healthy body.

"Because I have sores and scarring in my mouth, it's difficult and painful to eat. Eating takes a long time, and malnourishment is common for people with EB for that reason," Hartley said.

Taylor Hartley's love for his courageous wife is relevant. His attraction for her started when they first met at Brigham Young University in Provo, where they lived in the same apartment complex.

"One of my first memories was seeing Jamie on a Sunday in elegant white gloves, which I found out later to be bandages," said Taylor Hartley, 34, a criminal defense lawyer and author. "I still think she's highly attractive in them and very classy."

Taylor Hartley decided he wanted know more about her and decided to go visit her at her apartment.

"I found her writing an essay for one of her honors classes. I was eager to read the essay to discover how she thought. She was brilliant! Her thoughts flowed well and were very intelligently put together," said Taylor Hartley.

He soon discovered her passion for music.

"She told me about a CD of hers that was produced. It was to raise funds for research into a cure for her skin condition. I was happy to donate to such a good cause. She gave me the CD, I put it in my CD player and began falling in love because of her gorgeous soprano voice," Taylor Hartley said.

Jamie Hartley has produced two CDs, the first of which is a Christmas album.

"I felt her testimony from the worship lyrics that she sang on her Christmas CD," Taylor Hartley said. 'I distinctly felt she knew the one she was singing about, personally knew him."

Not too long after, Taylor Hartley turned his focus on the idea of marrying Jamie.

"Jamie was the type of girl I wanted to marry. However, I started to realize it may be a lot of work marrying Jamie because I would have to help take care of her and her needs," Taylor Hartley said. "After I listed to myself those things I would help her with, I made a promise to the Lord. I promised that I would always be there to take care of her."

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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