Despite her own trials, teen spreads goodwill

PEACHTREE CITY, Ga. — A typical holiday scene at an nursing home includes youngsters piling out of vans, arms laden with Christmas goodies, their voices harmonizing in carols of the season — and several of the youth tinged with timidity at first-time encounters with the home's elderly residents.

Ashley Kurpiel arrives a bit differently this December at Ashley Glen Assisted Living Center here. The 17-year old member of the Peachtree City Ward, Jonesboro Georgia Stake, drives up alone in a golf cart, traversing the few blocks from her home with trademark independence. Her cookies and cakes have yet to be made — she'll help the senior citizens bake their own on site. She returns a hug from an 89-year-old one-armed woman with her own one-armed embrace.

Though Ashley doesn't have as many Christmas memories as the residents, she hopes, as they do, for future joyous holidays — and joins some in the uneasy thought that this could be the last.

Ashley celebrates her birthday in December. She and her parents, Fred and Carol Kurpiel, count each year of her life as a gift from God. Doctors told them not to expect her to live to age 10. Though she can walk with a limp and has use of her one arm, she's uncertain about her longevity and quality of life.

Sister Kurpiel noticed a red, swollen lump on her daughter's right shoulder when Ashley was 2 1/2 years old. Ashley was misdiagnosed with a tumor-developing disease. Right before Christmas as she turned 3 years old, doctors amputated her entire right arm and shoulder.

It turns out the amputation was needless and the trauma actually worsened the progress of the disease that doctors later determined was really crippling Ashley's body. Ashley is among only about 200 people in the world known to suffer from the rare fatal disease fibrodysplasia ossificans progressiva.

"With this disease the body literally grows another skeleton," Sister Kurpiel explained. "Ashley doesn't have the gene that tells the bone when to stop growing.

"A normal person grows muscle and connective tissue over bone. Her muscles can turn into bone during what is called a flare-up. Any kind of trauma, a fall or even a shot of novocaine at the dentist's office, can cause a flare-up. Flare-ups can also be spontaneous without any apparent trigger. You can go into remission, if you will, for years, then suddenly just become encased in bone. Those in the last stages of the disease even have their jaws lock up in bone. They talk with difficulty through clinched teeth.

"An amputation was the worst thing they could have done," Sister Kurpiel laments.

"But it was for a reason, Mom," Ashley quickly adds. "Even that was for a reason. Everything is for a reason."

Ashley explains that she knows her Heavenly Father has a plan for her. She adds that she has faith one day she will comprehend why she had this disease.

Meanwhile, like most adolescents, she is making plans for the future. A child-care class at school has convinced her that she'd like to work in a nursery or with toddlers one day.

She is also working on her goal to give service to the elderly at Ashley Glen. Her baking and listening ear will count toward the Young Womanhood Award she is determined to earn.

However, Ashley's service is more than that. She said it was a way to emulate the Savior's teachings.

"My favorite scripture is Matt. 5:14-16," she explains. "I memorized it my freshman year [in seminary]. It says, 'Ye are the light of the world. A city that is set on an hill cannot be hid. Neither do men light a candle, and put it under a bushel, but on a candlestick; and it giveth light unto all that are in the house. Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.' "

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