THOUSAND OAKS : Girl Waits for 1-in-a-Million Donor Match

Waiting for a bone marrow donor for nearly two years has made 12-year-old Valerie Sun wise beyond her years.

“People might think that if they donate bone marrow that it might not grow back,” Valerie said. “I think that might be a big misconception. But it’s not like giving a heart or lung. It will grow back in just a few days.”

The Thousand Oaks girl was diagnosed with aplastic anemia in January, 1993. The disease causes bone marrow to cease functioning properly and is potentially fatal.

This week Valerie is participating in an American Red Cross drive to encourage more people to become bone marrow donors.

Although there are already 1.3 million people listed in the National Marrow Donor Program Registry, the chances of finding matches are still slim for most leukemia and aplastic anemia patients--about one in a million. No one currently registered matches Valerie’s marrow closely enough to risk a transplant.

A sibling or parent has about a 30% chance of being a match. But in Valerie’s case, no one in her family can be a donor.

Most of the potential volunteers are Caucasian, only 17% are minorities. Although it is not impossible to find a match outside ethnic groups, there are more likely to be matches among ethnically similar people. Valerie is half-white and half-Chinese.

For now the Thousand Oaks High School student--she skipped a grade and started school early--undergoes blood cell and platelet transfusions four times a month.

“I don’t dread it,” Valerie said. “But I don’t really enjoy it.”

In the days before a transfusion, she feels worn down and tired. She used to participate in gymnastics, but had to stop because it became too much of a strain. Contact sports are out. And last year she had to stay home from school because her immune system was too weak to handle the potential exposure to illness.

“I don’t really remember what it was like to have a normal blood count,” Valerie said. “I’m not really scared, but I’m not optimistic. I don’t really say to myself, ‘Maybe I’ll get a bone marrow transplant tomorrow.’ Instead I say, ‘I’ll have another transfusion tomorrow.’ ”

Wanting to find a donor has become a part of her life, and she has become well versed in the disease attacking her body. Talking about gene mutations seems as natural to her as talking about “Beverly Hills 90210.”

But it is impossible to be too detached from the disease.

“One time last year I saw this girl at school crying in the hall, and there were all these other girls around her comforting her,” Valerie said. “And I was thinking, ‘What’s your problem?’ Sometimes I think it would do people good if they had a disease for a week or something. Until they have it, they just don’t understand.”