Raina Khiani loves imaginative play with her sister Anjali or pretending to drive the school bus. She dances to music she adores and runs around out in the yard. She looks like any 2-year-old who loves life.
What's less visible is the fact that she is fighting for that life, alongside her parents, Kamal and Jamie Khiani, of Louisville, Ky.
Raina has a disease called severe combined immunodeficiency (SCID), a variation of so-called Bubble Boy disease. She's wildly susceptible to the dangers of fungal, bacterial and viral infections. Without a bone marrow transplant, one of them is apt to kill her.
Becky Patterson of Brigham City was listed for a bone marrow transplant after she was diagnosed with leukemia. The wife and mother of three young children eventually got one, but by then she was too sick. She died at age 35, leaving her husband, children and six siblings wondering what might have been had the match been a little closer and her condition a little better.
Diseases like those that place Raina and Becky among the 7,500-plus Americans searching for a bone marrow match each year send their families and friends looking desperately for strangers who can help them, since they didn't find a match in their close relationships. The 70-plus conditions that respond to marrow transplants include blood cancers like leukemia and Hodgkin's disease, lymphoma and others. When it works, bone marrow transplant is a cure.
About 12,000 people are diagnosed with something each year for which hope is a bone marrow transplant. About 1,000 people die each year waiting for a suitable match.
It's not that hard to save a life, says Trina Brajkovich, who coordinates activities in Utah, Montana and northern California for Be the Match, the organization that maintains the registry and provides other services and education. The test involves a cheek swab of saliva. The transplant itself is done one of two ways: A peripheral blood stem cell transplant is similar to donating blood platelets and is used three-fourths of the time. The other involves drawing marrow through a needle in the hip. The site is tender for a few days, but there's no residual impact.
The Institute for Justice notes that more than 35,000 people have donated bone marrow to strangers without a single death.
Raina is 2, but the fact that whether she will reach 3 is up to strangers is a bit maddening to her father, Kamal Khiani, who would do anything to help her. He and his wife, Jamie, have a Facebook page called "Be the Match for Raina." It offers the latest news on the child, on drives to find donors and pictures of the brown-haired, brown-eyed girl and Anjali, 4, snuggling or playing. They have a baby brother, Lukis, too, but at a month old, he's not nearly as much fun to play with.
Raina has a potential donor and plans are in place to do the transplant in a couple of weeks. But it's not a perfect match, which is ideally what they'd all like, so there have been other drives to get people tested. They're waiting for results on the latest one. How close the match is matters, though they're grateful they found one at all.
Becky Patterson was one of seven children, so everyone figured she'd find a match in her family. When they were tested, each sibling was a match to another sibling, but no one matched her, said her little sister, Sharon Smith, of Corinne, Utah.
If everyone would be tested, there'd be more potential matches and fewer heartbroken loved ones, said Smith, who helped organize a massive donor drive in the vision center at the Walmart where she works in Brigham City. In one day, they registered and swabbed 450 people. Some of them are likely matches to others who are waiting for life-saving transplants, she said with satisfaction. It didn't help her sister, but it did help.
There have been, to date, 14 drives for Raina. They've surely helped others, too.
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