OREM -- Most singers with Jamie Gibson's rare skin disease and raw sweet talent aren't releasing their first CD at 22. They are statistics in the medical journals.
Gibson is one of the oldest surviving people with recessive dystrophic epidermolysis bullosa -- a skin disease that effectively leaves a person without the protection skin is supposed to provide.Her hands, legs and feet are bandaged daily because everyday living causes the skin to slough, bruise and tear open. Her eyes blister. All of her mucous tissues are being ravaged.
Her mouth and throat are a cluster of open sores. Her tongue is so badly scarred she cannot lift it to the roof of her mouth. Scarring is also gradually robbing her of fingers and toes, and her esophagus long ago was replaced with a piece of colon.
She battles fatigue and pain every day, yet she's serving a 12-month family history mission from a Pleasant Grove LDS ward and has produced a new Christmas CD, "Ethereal Christmas," designed to raise money for research into cures for epidermolysis bullosa.
"She's amazing," said Gaye Beeson, a local singer who has befriended Gibson and was instrumental in helping her produce the CD. "She never complains, and the minute I heard her voice, I knew we had to do this."
Gibson's musical product is a touching collection of five Christmas songs she loves, including "Cantique de Noel," "He Shall Be Born" and "Jesu, Joy of Man's Desiring."
"We would have done more, but we ran out of time," Beeson said. "The ones on the CD are ones she chose. She knew exactly what she wanted."
Gibson has always loved music -- listening to it, singing it, even making music on percussion instruments, although that cost her dearly when she was playing the snare drum, the xylophone and the bells in the Dugway High School band.
"I probably couldn't do it now because I had more of my hands then. It did take its toll, but it was worth it," she said. "Some of my best memories of high school are of being in the concert band."
She has a naturally high soprano voice that reminds Beeson of the vocalists in the Vienna Boys Choir and is remarkable in quality and because she must rise above tremendous pain to sing.
That doesn't stop her. In fact, she said she's so used to the pain she only realizes she's having a bad day when she notices she's easily exhausted.
"I won't feel up to par and I realize, 'Oh, I guess I'm in pain.'
"I was in choir in high school and at Ricks College. It's a blessing to be singing," she said. "I love to sing."
But that's not the reason for the CD, however.
"The reason for the CD was to make something that people could get back after they make a donation to the epidermolysis bullosa foundation."
The compact disc costs $10, and all proceeds go to the research foundation. All production costs, including studio time at the Rosewood Recording Company in Provo, were donated by friends and family.
Gibson says there's a chance researchers may develop a reprogramming treatment that will reverse the effects of the recessive gene that creates epidermolysis bullosa.
If that happens, doctors could graft new pieces of "reprogrammed" skin onto her limbs and either delay the disease's effects or stop it.
That gives Gibson some hope for a future. But she doesn't dwell on it much.
"I'm not bitter or anything. I've just always felt like this is the way it's supposed to be. I don't think I would have it any other way because I've learned so much. It gives me a different perspective that most people have on life.
"Right now, my mission is my priority," she said. "Then I guess I might go on to school, maybe into music therapy."
Her goals are largely determined by the progress of the disease. Most victims of epidermolysis bullosa die of infection or skin cancers. Few live to be 30 years old.
Gibson's brother Benjamin died at 19 from the effects of epidermolysis bullosa, and she is closely watching the oldest survivor of the disease, a 27-year-old woman in California, to see what happens with her life.
"I guess she's kind of my pioneer," Gibson said.
"Right now, I'm just thankful for what I can do and for my family, mostly my mom and dad. They both raised me real normally. I was never allowed any excuse for not doing something," she said. "They didn't push us at all, but they just never stopped me."
To buy a copy of "Ethereal Christmas," call Beeson at 224-1417 or check the Web site at www.jamiegibson.homepage.com.