Daughter lost to rare illness remembered with events

View larger image Laurie Plavchan sits with her children, Samuel, 7 months, and Kara, 6, who is holding a picture of Sara, who died from complications from histiocytosis. Dennis Grundman/Daily View larger image This picture is one of the last taken of Sara before she died. Courtesy photo View larger image Stephen Plavchan's favorite picture taken with his daughter Sara. Courtesy photo

By Linwood Outlaw III - loutlaw@nvdaily.com

FRONT ROYAL -- Before she was diagnosed with a rare blood disease, Sara Plavchan was your typical, jovial toddler.

She was often full of energy, and she loved to be around her big sister, Kara.

"[Sara] started talking [when she was] very young. And, she'd let you know what she liked and what she didn't like," said Laurie Plavchan, Sara's mother. "She liked to play with her sister, and follow her around. They liked to be outside and help with anything [their] dad was doing."

In early 2008, Sara's health began to take a turn for the worse. Sara, her 6-year-old sister, and their parents, had all suddenly caught stomach viruses. While her parents and Kara eventually got better, Sara's symptoms persisted. Sara's frequent vomiting had her parents worried that she was suffering from something far more serious than a stomach virus.

At first, doctors calmed the Plavchans' fears by assuring them that Sara was experiencing acid reflux. For a while, that seemed to be the case. However, Sara stopped responding to acid reflux medication, and her condition worsened.

After Sara was admitted to Fairfax Hospital in March 2008, doctors performed a biopsy on her brain and ultimately determined she had Langerhans Cell Histiocytosis, a rare disorder caused by an abnormal accumulation of white blood cells called histiocytes. An excess of histiocytes -- white blood cells that fight infections -- clustered together can damage healthy tissues and organs throughout the body including skin, lungs, liver, eyes, ears, lymph nodes and the central nervous system.

Her illness required regular trips to -- and extended overnight stays at -- the hospital. Over time, she lost her ability to walk, talk and even eat. Sara also temporarily lost her eyesight.

"When I took her into the hospital, I had a little girl that could run, and jump, and eat, [and was] potty trained. And, that was a very far cry from what I had when I got her out of the hospital," said Sara's father, Stephen Plavchan, 35. "[Sara] did everything she could. ... She was very resilient. And, actually, it makes you realize how tough these kids are."

Sara fought the disease for nearly a year after her diagnosis, but died on March 26, 2009. She was just 3.

Often referred to as an "orphan disease," the exact cause of Langerhans Cell Histiocytosis is unknown. The disease affects an estimated one in every 200,000 children each year. Most people diagnosed with histiocytosis are children under the age of 10, but the disease is also found in adults of all ages. Because histiocytosis affects so few people, it doesn't warrant significant government supported research, says Jeffrey M. Toughill, president of the Histiocytosis Association of America.

Histiocytosis is not easily detected. A diagnosis is usually made following a biopsy and microscopic examination of the affected tissue. Additional exams, such as X-rays and blood tests, may be done to determine the best course of treatment. Patients do not catch histiocytosis from anyone and cannot infect other people, experts say.

The fact that there aren't any simple tests to diagnose histiocytosis troubles the Plavchans, particularly because they want Kara and their 7-month-old son, Samuel, tested for the disease. Histiocytosis, however, is not known to be hereditary.

"We're trying not to overreact with [Kara and Samuel], but I am definitely keeping a more watchful eye [of possible histiocytosis symptoms]," Mrs. Plavchan said.

Although some histiocytosis cases are fatal, the vast majority of patients will survive the disease, officials say. Treatment options will depend upon the individual patient.

Sometimes, the disease will go into remission without any treatment. For others, radiation therapy or chemotherapy may be prescribed. Histiocytosis, however, is not a form of cancer. Possible symptoms may include fever, weakness, lesions, skin rash and vision problems.

About a month after Sara's death, Mrs. Plavchan, 34, felt inspired to do something within the community to preserve her daughter's memory and raise awareness about such a mysterious disease.

Using Sara's infatuation with helping Kara make art projects as her platform, Mrs. Plavchan has recently held two "Crafts for a Cure" events at Ressie Jeffries Elementary School in Front Royal. The first event was held in November, and the most recent was in March. The events generated more than $700 in donations. Mrs. Plavchan said she plans to hold another Crafts for a Cure event later this year.

Children ages 2 to 10 are invited to participate in the event and make various art-related projects with assistance from adults. Money raised from the events benefits the Histiocytosis Association of America, which was established in 1986 to help educate and connect patients and families coping with histiocytic disorders.

"The only way that children or families can have hope is if research occurs," Toughill said.

"That's why the efforts of [the Plavchan] family, and other families that raise funds, are so important. That allows us to actually fund research at medical institutions around the world."

Toughill says the Histiocytosis Association of America helps to remind families dealing with the disease that "they're not alone."

"We give them the capability of networking with other families, learning about the disease, [and] taking comfort, knowing that they're not alone," Toughill said.

Meanwhile, the Plavchans are doing whatever they can to spread the word about the potentially fatal disease -- while, at the same time, keeping their daughter Sara's memory alive.

"She definitely touched a lot of people's lives in three years," Plavchan said.