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Scars something to be proud of, author tells kids

Idaho woman who has cystic fibrosis publishes ‘Scardust’

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TWIN FALLS, Idaho (AP) — When a star falls, the Scardust Fairy scoops up glitter left behind in the sky and sprinkles it on the scars of little children, making scars into something beautiful, something to bear with pride.

It's a tale woven by a woman with the scars of close to 50 surgeries, to comfort children whose bodies show the evidence of fires, accidents, disease or the surgeon's knife.

"Scardust," a self-published children's book by Jennifer Devine, went on sale recently after three years' work by Devine, a benefactor's donation toward publishing costs and a College of Southern Idaho professor's encouragement and coaching.

Diagnosed with cystic fibrosis at age 2, Devine wasn't expected to live to 4. She faced similar expectations throughout her childhood.

"Four turned into 8, 8 turned into 12, 12 turned into 15," Devine said, talking with a reporter at the Twin Falls coffee shop where she held frequent meetings with her book's illustrator.

In 1999, doctors said she had just 12 months to live without double-lung and pancreatic transplants. Hospitalized monthly, Devine relied on intravenous antibiotics and couldn't walk from her bedroom to her bathroom without collapsing from exhaustion.

Mike Pohanka, an adjunct professor of economics at CSI, speaks with amazement of Devine's "insatiable thirst for life."

"I don't know how she continues to stare death in the face and overcome it day after day after day," Pohanka said.

Now at 29, Devine is three years away from the average life expectancy for cystic fibrosis sufferers. But alternative medicine has been extremely successful, she said, and the past four years have been relatively healthy ones. Hospitalized in December for a bowel obstruction, Devine survived respiratory arrest and what she calls a "death experience."

"Then I knew it was time to finish this," she said, patting her single, precious advance copy of "Scardust."

Though still receiving disability benefits, living with her parents and unable to work full time, she appears as lively as any of the other coffee drinkers sipping and chatting at nearby tables.

"I don't see cystic fibrosis as the cause of my death anymore," Devine said.

Devine has other reasons for happiness, too. She graduated from CSI in May with a degree in liberal arts — "It took me 10 years to get my associate's degree, but I did it," she said — and she's excitedly planning her Sept. 24 wedding. Getting her book into print fanned hopes of financial self-sufficiency and of raising money for medical charities that treat children whose parents can't pay.

But visible above the lapels of her suit jacket are pink scars from some of her 45 or 50 surgeries (she hasn't kept count exactly). Seven of those surgeries were to insert devices for permanent intravenous access; one removed a length of intestine; 25 were sinus surgeries. It was in the aftermath of her hysterectomy, grieving that she'd never give birth to a child, that Devine found the desire to improve the lives of many children.

"I'm very proud of her," fiance Brian Hatch said by telephone from Scottsdale, Ariz. "She just likes to help people, and I think this is what this book's all about."

Devine's book, darling and imaginative, certainly will help scarred children, said Tammy Prevost, a nurse at Freedom Medical Center for Advanced Medicine in Provo, Utah.

"It shows to me that little kids that have to suffer aren't alone in suffering," said Prevost, who read Devine's manuscript.

Publishers balked at references to God in "Scardust," Devine said, but she was determined to see it to print. Her dream captivated Pohanka, who encourages the would-be entrepreneurs in his classes.

"I challenge them to push themselves through the fog. A lot of times we think that fog's a mile thick, when it's really wafer-thin," Pohanka said.

He helped Devine research her book's niche (they found no other children's books on scars), advised her to get it illustrated, helped her connect with donors and coached her on marketing. Since February, Pohanka wore on his right wrist a purple "breathe easy" cystic fibrosis bracelet, promising Devine she could cut it off when her book was published. She snipped it off recently.

"I think this book's going to be a phenomenal book," said Pohanka, whose nephew has visible scars from a childhood fire years ago. "If this book would have been out . . . I know I would have bought this book."

The project's costs so far have mounted to $6,000, Devine said, including illustration and production fees, about $1,700 for publication by Bloomington, Ind.-based AuthorHouse and $1,300 for her initial purchase of 135 copies. (It's print-on-demand publishing, and she'll pay less per copy if she becomes able to order in larger numbers.)

A benefactor who doesn't want to be named publicly gave Devine $2,000 toward those costs, her parents helped with the rest, and Devine is preparing an application for a regional bank's $2,000 women-in-business grant.

Service clubs in Twin Falls and Jerome will pay for Devine's trip to an August conference of children's book writers and illustrators, where she can pitch "Scardust" to publishers and literary agents.

Two thick binders hold Devine's marketing research — for example, information on burn trauma centers, book distributors and cancer support groups. Devine hopes to get "Scardust" added to the inventories of major retail chains, hospital and airport gift shops, online support groups, the dermatology community, a national firefighters association and veterans groups. She'd like to partner with health product manufacturer Johnson & Johnson to create "Scardust" scar patches, and she's initiating conversations with major charities she hopes might partner with her to sell the book.

"And Oprah is one of my goals," Devine said. She covets endorsements from television host Oprah Winfrey's book club and by a national psychology association.

Lofty goals, yes. But Pohanka tells her nothing is unattainable. He intends to schedule Devine as a guest speaker in his economics class, to inspire other young entrepreneurs to follow their dreams.