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Make-A-Wish Foundation Made a Life for Bail
By Jane DeMouy
On the Front Page...
Evin Louisa Tally Bail's story is about two births: the day in 1975 when the nurse first handed a little pink bundle to her mother, Julia, and a rebirth that took place many years later through the work of the Make-A-Wish Foundation of the Mid-Atlantic, Inc. one of thousands of groups that benefit from NIH's annual Combined Federal Campaign.
Evin was a pretty blonde toddler, and "smart as a whip," says Julia Bail, a research support assistant at the Clinical Center. In spite of her parents' best efforts, she was always sick. The Bails and Evin's pediatricians were baffled by the illnesses that stacked up in their little girl's medical history. A simple cold could become pneumonia; high fevers and infections were common; Evin had bronchitis, chronic sinus problems, meningitis, sepsis. Her doctor treated everything aggressively, but Evin failed to thrive. Because of frequent intestinal infections, she couldn't keep much food down, and weighed only 25 pounds when she entered kindergarten.
Julia Bail describes her daughter's medical treatment as "damage control" until she became 11. That year, a serious bout with mononucleosis landed her in the hospital, where she was diagnosed with idiopathic thrombocytopenic purpura (ITP), a blood disorder in which the platelets that cause blood to clot are deficient. An infusion of intravenous immune globulin (IVIG), the treatment of choice, sent Evin into anaphylactic shock. The local hospital gave up on her.
Her desperate mother contacted NIH and was referred to an NIH-funded researcher at Duke University. Duke doctors diagnosed Evin with primary immune deficiency and many other problems in addition to ITP. Blood tests identified antibodies to IgA in the IVIG given to her. With that insight, NIH doctors were able to give Evin IVIG infusions that stopped her chronic infections without sending her into shock.
Julia Bail credits NIH with saving her daughter's life.
The Bails took a deep breath. It began to look as if Evin's chronic ills might be controllable. But there was other fallout from her chronic and persistent sicknesses. At 16, Evin was still exceptionally small for her age, and constant illness had left her shy about talking to other people. Enter the Make-A-Wish Foundation, established to fulfill the special dreams of children diagnosed with life-threatening illness, in hopes of giving them a memorable and joyful life experience in the midst of their fight for health. Too shy to reveal her heart's desire to foundation staff, Evin confided her dream to her mother: she wanted to meet the cast of Beverly Hills 90210, the popular TV drama about a group of affluent teens.
Evin was not the only one who wished to shake hands with the most popular kids in America. Her name went on a list. But when her turn came, she confronted a decision. Another girl, farther down the list, was not expected to survive beyond the next 2 weeks. Would Evin give up her turn? She did. A week later, Beverly Hills 90210 unexpectedly closed its set. Not to be outdone by Evin's generosity, the Make-A-Wish team arranged for her to appear in a program with Brian Austin Green, who played David on 90210. A TV fundraiser, Sega Star-Kids Challenge, featured teams competing to raise dollars for their charity.
Evin spent three happy days in California as the mascot on the Make-A-Wish team headed by Green. He introduced her to other TV icons like Scott Baio and Nicole Dubuc and Chelsea Hertford, stars of Major Dad.
"If life's a box of chocolates, Evin got them all," Julia Bail says of that life-changing trip. "She went out there a shy, withdrawn, sickly child. When she got back, she simply said 'I'm fine.' It was the most wonderful thing, and the CFC helped make it possible," her mother remembers.
Evin says of Make-A-Wish: "They're the people who put the silver lining back in clouds." With new confidence, Evin volunteered for Make-A-Wish activities for a year, acting as a Make-A-Wish mascot for fundraisers for cystic fibrosis and muscular dystrophy.
"Sixteen years ago, I nearly lost my life," says Evin, "and Make-A-Wish changed it." Evin now has fun rollerblading and ice skating, sports that would have been impossible before her treatment was refined. She's become a rock climber. She went on to graduate from Chestnut Hill College in Philadelphia, where she majored in fine art studio and communications. Today, at 28, she is a statuesque blonde, whose healthy beauty betrays no sign of the disability she is still treated for once a month.
Nor is she the socially reticent young girl she once was. She travels across the country, speaking on behalf of Make-A-Wish and Baxter/Biolife, the company that makes her life-sustaining medication. In 2003, she was the keynote speaker for the Combined Federal Campaign for the National Capital Area, which she and her mother still wholeheartedly support. That same year, Make-A-Wish fulfilled 363 wishes for children with life-threatening ailments.
"My life used to be something I fit in around my illness. Since Make-A-Wish, my illness is something I allow into my life," Evin says. To see her original handmade books, visit http://www.formalsys.cnchost.com/eb_books.html.
For more information on the CFC and the charities it supports, see http://cfc.nih.gov.
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