Ashley Kurpiel will tell you that her life is about giving, not survival, though she has a rare fatal disease.

The attractive 17-year-old Starr's Mill High School junior has fibrodysplasia ossificans progressiva (FOP), a condition in which the gene that stops bone growth is missing. But that did not cause Ashley to be without her entire right arm and shoulder.

"That was a misdiagnosis," Ashley says. "So if I tell my story, maybe other people with FOP won't get missed like I did."

Ashley's mother, Carol Kurpiel, says the severe amputation was done because doctors thought she had a tumorous disease. An amputation was "the worst thing they could have done," as it aggravated the FOP, she added. The condition is so rare that Ashley has been interviewed by national and international television programs, which will feature her daily life and service projects.

Life with one hand and arm is limiting, Ashley says, but she doesn't let it depress her often. When asked the most difficult thing to try to do with one hand, she answers with the typical teenager's distraught emphasis:

"My hair!"

She has begun a nursing home service project that is connected with her church, the Church of Jesus Christ of Latter-Day Saints in Peachtree City. Ashley says that the people there are "awesome ... they are so sweet," and that she feels equally at home working with children or senior citizens.

A child care class in school, which allows the students to actually work in a small day care center on the Starr's Mill campus, is one of her favorite things to do, Ashley says. It makes her want to work with kids when she's out of school. She already has had jobs with Kroger grocery and with a beauty salon in Peachtree City.

Carol talks openly about Ashley's disease, noting that the teen cannot help being dependent on others for some things. But her daughter's first love is independence, Carol says, which Ashley is developing more of with the gift of a golf cart for her own use. The mother of three says that there have been times when she has been guilty of projecting her own needs on to Ashley, but those times are past.

The family went to the expense of a custom prosthesis when Ashley was in elementary school, and she dutifully endured the mutltiple straps and connections, but would often come home "literally dragging that artificial arm behind her," Carol relates.

As she was taking the prosthesis off Ashley's "tired little sweaty body," Carol dsays, "I realized she was wearing that for me, because I wanted to see my daughter with two arms not because it did any good." There was no muscle tissue available to make the prosthesis move in any way, Carol said.

"It was pointless," Ashley says philosophically.

Left-handedness developed easily for Ashley because her amputation took place just before she was three years old. When the right diagnosis was made, Carol says, the family was told "go home and enjoy her, she won't live past 10." They all refused to accept that, especially the fiesty little one who quickly learned to "hold" things between her knees so she could manipulate with one hand.

Both mother and daughter stress the importance of "publicity as a way of getting information out about FOP." The more people that are found with the condition, Carol says, the closer researchers can come to finding a cure. That cure would not only apply to FOP, she adds, but to other conditions such as osteoporosis: "If they can find the gene that keeps bone growing, they can go on to find out what stops bone growth, or makes bones brittle."

Carol credits Dr. Fred Kaplan of the University of Pennsylvania as the leading authority on FOP in the country. Work with an increasing number of identified FOP patients, she says, "means that they have now discovered the drop in the swimming pool, and isolated it to the diving board area ... the future definitely holds hope."

Ashey shares her mother's optimisim that a cure may be imminent, but says she just cares about doing what she can for others as long as she can. And watching the Atlanta Braves, with her dad Fred or on television.