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Transfusions are teen's lifeblood
By JENNIFER FARRELL, Times Staff Writer
But as the needle marks fade from the pale skin on her arms and hands, the 16-year-old Central High School sophomore knows she is that much closer to needing more blood. "When I get blood, I feel normal," she said. "But when I'm low, I get tired. I get headaches, dizzy. Every week it drops a little bit." Diagnosed in 1999 with a rare disease called pure red cell aplasia, Lori relies on monthly transfusions to survive. Since she was 12, doctors have experimented with various medicines, hoping to kick-start her system back into action, forcing her body to start producing red blood cells again. So far, nothing has worked. As time goes on, Lori and her family are hoping for a miracle: that one day she will wake up and be cured. The search for an answerLittle is known about the condition that saps Lori's strength, leaving her drained and exhausted. At first she was misdiagnosed with aplastic anemia in 1998. During a monthlong stay in the hospital, she developed a blood clot and suffered a stroke. Over time, doctors recognized her disorder and switched treatment, but they have yet to offer a definitive prognosis. An Internet search on the disease yields only a handful of on-target hits, and doctors in Spring Hill are reluctant to treat Lori, said her stepmother, Christy Kroner. Kroner, 25, a dental assistant in Spring Hill, said she and Lori's father, Scott, have struggled to find a cure for Lori. "They don't know much about it," she said. "Nobody around here is comfortable seeing her." So few people have the condition that the couple have been unable to find a support group to turn to for answers. They drive Lori to All Children's Hospital in St. Petersburg for exams, and to Tampa for monthly transfusions. All doctors can tell them is that Lori might grow out of the disorder with time. But she might not. "I can have this for the rest of my life, or I can outgrow it, I don't know, any time," said Lori. "There's no one my age that has this." Dr. Chris Rossbach, a pediatric hematologist and oncologist, treats Lori at All Children's. Rossbach said her condition has stumped doctors. "It is very rare," he said. "We have no explanation." To help offset elevated iron levels caused by the frequent transfusions, doctors have prescribed an aggressive course of therapy. Five nights a week, Lori inserts a catheter into her leg, allowing a small machine to pump medicine into her body in eight-hour regimens. Sometimes the catheter comes free during the night, and sometimes Lori's cat, Casey, chews on the clear plastic tubing, tugging it out of her leg. But the procedure is still better than the alternative: having the medicine administered in the hospital, where it would take two days every month. No one is sure how Lori contracted the disease, but doctors think it might have developed from a cold virus. At some point, her bone marrow stopped producing red blood cells. "It just knocked my system out of whack," she said. As a last resort, the family is considering a bone marrow transplant. Living with the symptomsFor the time being, Lori said she can manage the symptoms. She got her driver's license last month, followed by a car from her grandmother, which she promptly outfitted with a 150-watt booster for the speakers. On Wednesday, she drove solo to school for the first time. At home that night in the family room of their house on Elgin Boulevard, Lori said she is thinking about a career in medicine and plans to start with an internship in a local cardiologist's practice. "I thought about being a phlebotomist or maybe a radiologist," she said. Glancing across the room, Scott Kroner bragged about his daughter's ability to spell both occupations. "She knows more medical jargon than the average bear," he said. As a parent, Kroner said, Lori's experience has been trying. "We've tried all the medicine out there for her, and she hasn't responded," he said. "It's tough. You kind of wish that it was you." Above all, Kroner said, the family is indebted to the strangers whose blood courses through Lori's veins. "If it wasn't for people giving blood, we'd have a hell of a time," he said. "The people that give blood, they save her life once a month. Thank God there's people that take time to actually go out and donate. If we could, we'd write a letter to each one that gives a pint and say, 'Thank you.' " -- Jennifer Farrell covers Spring Hill and can be reached at 848-1432. Send e-mail to
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