Can You Save Kailee?

By Mary C. Hickey

Searching for a Match

	The best treatment for aplastic anemia (and many other life-threatening blood diseases, including leukemia and non-Hodgkins lymphoma) is transplanting bone marrow donated by a sibling of the patient. A brother or sister is most likely to have a similar type of marrow. In some cases, a parent or other blood relative may be able to provide viable marrow. "With Kailee, we don't have those options," says Debbie Richards, R.N., who coordinates marrow-donor surgery at the Children's Hospital of Wisconsin.

	Since May, Richards has been scouring bone-marrow registries around the world--which include more than 8 million potential donors--in search of a match for Kailee. "Finding an unrelated donor match is always a long shot," she says. "But it's a longer shot still for a child who's not a Caucasian of European descent."

	Though virtually anyone of any age or ethnicity stands a chance of being a suitable donor, doctors are more likely to find a match within the patient's ethnic group. But of the roughly 4.6 million people registered as potential donors in the National Marrow Donor Program, only about 6 percent, or 304,041, are identified as of Asian or Pacific Island descent. Not one is a match for Kailee.

	With time running out, Linda and Owen are rearranging their lives to save their daughter. They recently sold their home and moved to a smaller one that was more afford- able on one income. Owen has cut back his work schedule, traveling to Wisconsin every chance he gets. Last spring, he spearheaded a bone-marrow donor drive in Albuquerque that drew 543 potential donors. None matched Kailee. "But we're going to be able to help somebody out there," Owen says. "And that does my heart a lot of good."

	They have also created a Website, www.kaileegetwells.com, on which they have posted a letter from Kailee: "My family has set up this Website for me as a means of gathering as much information and goodwill as I possibly can to help me get through this. I am interested in any kind of conventional or alternative therapies, including herbal, nutritional, or Chinese medicine."

	Linda and Owen are prepared to do whatever they can to help Kailee get well. "If she doesn't make it, we don't want to look back and think, We could have done this, or we should have done that," Linda says. "At least we'll know we did everything possible, everything within our power, to save our little girl."

Facts About Bone Marrow

	Kailee Wells is one of 3,000 people in the U.S., many of them children, who are searching for a suitable bone-marrow donor at any given time. Finding a match is difficult because everyone's bone marrow is unique, much like a set of fingerprints. The only perfect match would come from an identical twin. But transplants can be successful when tissue types are close. Matches are determined via a simple blood test known as human leukocyte antigen (HLA) typing. The test identifies ten antigens, which can occur in a variety of combinations. The greatest chance of transplant success comes when a recipient and a donor share all ten antigens. Finding the right match can be like looking for a needle in a haystack. "But the more people who have their blood tested and their names listed on the registry, the better our chance of making a match," says Debbie Richards, R.N., who coordinates bone-marrow-donor surgeries at the Children's Hospital of Wisconsin. The need is particularly acute for people of Asian, Hispanic, Native-American, and African descent.

Join Us--Become a Donor

	Parents has donated $10,000 to the Marrow Foundation, a partner of the National Marrow Donor Program, to help cover lab costs of tissue-typing blood (fees can be as much as $96 per volunteer) and particularly to support the recruitment of minority donors. You can help by starting or joining a bone-marrow drive in your community--check local blood banks or Red Cross facilities. To learn more about joining the National Marrow Donor Registry or to find a donor center near you, visit www.marrow.org or call 800-627-7692. Interested readers can also contact Aplastic Anemia & MDS International Foundation (AAMDSIF) at 1-800-747-2820, or through the web at www.aamds.org.  (Part 2 of 2)