As an infant, Jamie Gibson Hartley wanted to keep up with her older brothers. She crawled all over the house until her hands were raw with blisters. But the painful blisters didn’t slow her down. She turned her hands over and crawled on the backs of her hands until they became raw. Then she crawled on her elbows. As soon as her hands were healed, she was back to crawling on her hands.
Jamie is one of approximately 100,000 Americans who suffer from epidermolysis bullosa (EB), a genetic skin disorder that destroys the skin, mouth, throat, and esophagus. The sores and scar tissue that develop from friction against the skin are a part of daily life for 28-year-old Jamie. Yet, even with a painful disease, Jamie touches lives by sharing her optimism, her faith, and her musical talent.
The youngest of four children, Jamie was the second of Jim and Sheila Gibsons’ children born with EB. Her older brother Ben also suffered from the disease and passed away at age 19. Most people with EB are not expected to live past the age of 30, as the sores and scar tissue often lead to infection, malnutrition, and skin cancer.
Jamie’s disease affects the daily activities of her life. “It takes me a lot longer to do normal things,” she says. Before dressing every day, she wraps her entire body with gauze to protect her skin and prevent sores. She avoids crowds where physical contact with other people could open new sores. She blends foods into liquids because solid foods can damage her esophagus.
When Jamie was six, her esophagus scarred shut, and she underwent a surgery that rebuilt it. At that time the Gibsons were stationed in Japan for Jim’s work with the U.S. Army. President Gordon B. Hinckley, then President of the Asia Area, made a special trip to give Jamie a blessing before surgery. He blessed her that she would “live a reasonably normal life” and “be a joy to those around her.”
“I have seen that come to pass,” Sheila says. The Gibsons have done their best to support Jamie’s determined spirit, following a pediatrician’s advice that she would become as much as they let her become.
Passionate about music from a young age, Jamie joined her junior high school band and played percussion. When she could no longer hold the mallets because of her bandage-wrapped hands, Jamie joined the choir, even though she couldn’t sing very well. The Gibsons hired a voice teacher, and Jamie went on to sing in the Ricks College Women’s Chorus and in the Brigham Young University Women’s Choir.
“Singing in the BYU Women’s Choir was one of the most spiritual experiences of my life,” she says. Jamie viewed the choir as a way to share the gospel. When people told her after a concert how good the music made them feel, she explained to them that they were feeling the Holy Ghost.
Since graduating from BYU, Jamie has been a featured soloist with choirs in St. George and Logan, Utah, and has sung the national anthem at professional baseball games. She recorded a Christmas CD that raised $10,000 for the EB Children’s Research Foundation, and she recently returned from a trip to Belgium, where she sang to raise money for a family with a child suffering from EB.
What makes Jamie’s success in music so amazing is that her mouth and throat are always full of sores and blisters, and her tongue is so badly scarred that she can’t touch it to the roof of her mouth. A close friend of Jamie said: “Jamie has the voice of an angel. The fact she can sing at all, considering all the scar tissue she has to get around, is a total miracle. There are few singers who capture the emotion Jamie does.”
The emotion Jamie captures through song has influenced many lives. One time a stranger came to the Gibsons’ front door holding a long-stemmed rose for Jamie. He cried as he explained that he had been planning to take his own life, but after hearing Jamie sing at a concert, he was inspired to live. “This is the kind of influence Jamie has on people,” Sheila says. “Heavenly Father uses Jamie as an instrument in His hands.”
Jamie has also been a role model for hundreds of youth with skin disorders while working as a counselor at Camp Wonder in California and Camp Discovery in Minnesota. When her campers get discouraged, she tells them jokes and helps them see the good in life. Several of Jamie’s friends with EB have had limbs amputated because of a form of skin cancer that is common among people with EB. Jamie is now facing a similar trial, but she maintains a positive attitude through her sense of humor, joking that when she dies, she wants “to go in peace, not in pieces!”
In college, as her peers began planning their futures, Jamie knew that her life would always be different from theirs. Jim explains how Jamie remains optimistic about her future family by likening her to Lehi in the Book of Mormon: “Lehi was told he would receive a promised land, and he rejoiced. He hadn’t even received it yet—he hadn’t built the boat—but he rejoiced in it as if he had already received it” (see 1 Ne. 5:5).
She also turns to Heavenly Father in prayer. “I get nearest to Heavenly Father by taking the time to pray out loud,” she says. Even though it can be difficult to find the privacy and the quiet time to pray out loud, “it is so humbling.” Second, she listens to uplifting music. “Music calms me faster than anything,” she says.
Although Jamie’s suffering is constant, she is quick to express gratitude for her blessings. She says she realizes that many people with her disease do not have the light of the gospel to help them cope with the pain, and she asks herself, “Why am I the lucky one?” She knows she will be resurrected with a perfect body. And as a Latter-day Saint, she has a support system wherever she goes. “The notes, the compliments, and the time people take to encourage me—I appreciate those things,” she says.
Because Jamie and her older brother Ben have suffered from EB, the Gibsons say they have truly valued their time together as a family. “Some people see Jamie’s condition as a tragedy. But those who understand Heavenly Father’s plan seem to realize that things happen for a purpose, and we are just so blessed to know Ben and Jamie,” Jim Gibson says. Just a couple weeks before Ben’s death, Jamie and Ben both received their endowments in the Salt Lake Temple. For the last time in this life, Jim and Sheila had all of their children together with them. In the celestial room they embraced in a family hug. “It was a special highlight of my life,” Jim says.
Not knowing what her future holds, Jamie commits her time to touching lives and helping people feel the Spirit. She says: “So much comfort has come from knowing that Heavenly Father loves me. I have never doubted that. I have never thought that He loves me any less because I have this disease.” It is this testimony of God’s love that gives Jamie the power to achieve her goals.