Diagnosed with a rare immune deficiency disease this summer, 21-year-old Kelsey Koch is still searching for a bone marrow match to combat the virus.
Kelsey, her sister Karly, and their mother and grandmother hosted a donor drive Friday at the Atrium. About 100 students and passersby participated.
The match test is simple, said their mother Tammy. All a person has to do is brush the inside of their cheeks four times for 10 seconds each. Before this method was available, a person would have to have marrow extracted from their bone in order to be tested.
"It's not new," Tammy said. "People just don't know about it. The old way is what people remember."
The family has held various drives for match tests during the year, but the girls' condition continues to worsen. They just returned from a 100-day visit to the hospital two weeks ago.
The girls can share one donor, but blood marrow donors are generally hard to come across. Each of the girls' four siblings and their parents has been tested for a match capability, but they came back negative.
The condition Dock8 is recessive, and the sisters are two of 11 people in the world who have it. Neither of their parents, or their siblings, show signs of having the virus. Symptoms include chronic sinus and ear infections, bronchitis, pneumonia and skin infections.
For Kelsey, the virus is more noticeable. Welts cover part of her face and neck, and Tammy said these areas can potentially be cancerous. The marks are a result of her poor immune system not fighting the bad cells. Kelsey said she isn't taking classes this semester, but she's trying to finish up classes from the fall that were incomplete, due to all her time spent in the hospital.
For Karly, the condition isn't as noticeable. She gets more inwardly sick, her mother said. Karly gets periodical bouts of pneumonia and she walks more slowly. She likes to dance and play volleyball, but she can't do those things anymore because she's weakened by the virus. Karly is involved in her church youth group, and she's home schooled.
Tammy said she's grateful to her coworkers and church community for all their help, taking match tests and bringing dinner by their house.
The girls are patients at the National Institute of Health in Baltimore. Since Kelsey's condition is more serious, they're hoping for a match this summer so she can have a stem cell transplant.
Their mother is a hygiene specialist at Dr. Tom Rector's office on W. McGalliard St. in Muncie, but she's taken a five-month hiatus since the girls have been in the hospital. Her husband is a teacher in Parker City.
After this drive, the family will have collected almost 1,000 match tests. They're still hopeful, but time is running out until Kelsey's stem cell transplant is scheduled. Students who didn't make it to the table at the Atrium Friday can take a match test at Dr. Rector's office at 1003 W. McGalliard St.
Watch an interview with the family on DN TV
Check out Kelsey's blog at kjkdancingthroughtherain.blogspot.com.
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