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."

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