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.
Look to youth
College campuses are becoming a favorite hunting ground for donors, because they're an age group that provides excellent life-saving bone marrow.
Adults 18-44 make the best bone marrow donors, so Be the Match actively recruits that demographic. There are already 30 clubs on campuses nationwide and the number is growing.
Phil Rutledge can rattle off statistics about illnesses that can be treated with bone marrow transplant. A Logan, Utah, native who is a senior in exercise science at Utah State University, Rutledge helps plan "Be the Match" drives on and off the Aggie campus.
The most shocking thing he's found as he's talked to fellow students, he said, is how many of them believe that they have to donate part of their actual bone — as in have a chunk cut out — to be a bone marrow donor. Fear of that drives some away, which frustrates him because it is not true.
"It's more like donating plasma. And who's afraid of that?" he said.
College campaigns like the USU one use social media and events to spread the word about need and about activities that will raise money to help cover the costs of testing. Because anyone 18-44 can register for free in conjunction with donor drives, a monumental amount of fundraising is needed nationally. They also try to educate people so they won't get on the registry if they don't intend to follow through. If it's sad to lack a match, it is perhaps worse to locate a match in the registry and then be unable to find the individual or learn he or she no longer wants to do it. The number of no-shows is "significant," experts said.
Rutledge became interested because he worked with a man whose son died from a cancer that bone marrow transplant might have cured. He started the Be the Match club at USU last year. Now members are working on a drive to register donors and raise money in October.
Nuts and bolts
Once listed, one can remain on the registry until age 61, Brajkovich said. They used to list a broader age range, but data and doctors agreed the best results came from that 18-44 age group. Since funding is scarce to cover the cost of listing people — it's close to $100 each to run the tests, do paperwork and more that's part of the process — they put their efforts there, where the potential good is greatest.
People who are 45 to 64 can still join the registry, but they have to pay the cost themselves and the odds are they won't be chosen if there's any other possible match. Brajkovich said older donors can have a greater impact by donating money to help cover the cost to test younger donors for would-be matches. "Why not sponsor someone who will be called?" she asked.
Besides the very important task of running the registry, Be the Match works with the nation's 150 transplant and donor centers, provides education and counseling, and will even walk a patient's family through what national account executive Nadya Dutchin calls "murky insurance waters."
Bone marrow transplant matching is quite different from organ transplant matches. Patients are not prioritized by some method such as how sick they are. It's by match. You do or you don't.
Dutchin has been charmed and impressed by the various ideas people bring to raising money and finding matches. Last year, students at James Madison University interested pilots in their cause. They teamed up for Flight Against Cancer. The price of admission to the fundraiser included food (donated), a T-shirt (discounted), games and free plane rides.
A child this year convinced her school, which wears uniforms, to let her hold a campaign for the cause. For a $5 donation, a child was able to wear jeans to school on a special day.
You can learn more about Be the Match and marrow donation online.
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