Kailee Makena Wells is a spunky, inquisitive, and energetic 5-year-old. She loves practicing ballet, dressing up as a princess, and playing with Ruby, her favorite doll. She can write her name and has started to read. At first glance, she's a typical kid.
In one enormous way, however, Kailee is remarkably different from other children: She has severe aplastic anemia, a rare blood disease that could end her life.
Kailee was a robust and healthy 1-year-old when Linda and Owen Wells traveled to China's Hunan province to bring their daughter home. They had been married for 15 years, and Owen had helped raise Linda's three children from a previous marriage. With those kids grown and out of the house, the couple wanted a family of their own. "We have a friend who'd adopted a baby from China, and we knew that there were millions of little girls in need of homes," Linda says. While on vacation in Hawaii, renewing their wedding vows, the couple decided to adopt. "We looked at each other and said, 'We can do this,' " Linda recalls. "We were staying in a town called Makena, so that's what we picked for Kailee's middle name."
The Wellses welcomed their new daughter to a luxurious mountain-style house just outside Albuquerque, New Mexico. Though both parents worked--Linda as a lawyer and Owen as the owner of a graphic design business--they arranged their schedules so that one of them could be with Kailee most of the time.
The little girl thrived, never coming down with anything more serious than the usual childhood sniffles.
But last January, one day after her fifth birthday party, Kailee developed what seemed like a mild flu. She was unusually tired and had a fever. The emergency-room physician, who diagnosed a virus, prescribed fruit juice and Tylenol and sent her home.
The following day, Kailee's fever spiked to 105.6°F, and her worried parents took her to the pediatrician. Again, they were told she had a virus. But the next night, Kailee's nose began to bleed heavily. The bleeding continued for five hours. When her parents took her to the hospital, tests revealed that her red-blood-cell count was far below normal. Kailee was transferred to the intensive care unit, where doctors promptly performed a bone-marrow biopsy.
"When the results came in, the nurse escorted us to a room at the end of a hallway," Linda recalls. "As we were walking there, I knew we were about to get news we didn't want to hear."
Aplastic anemia is a disease that causes the bone marrow to malfunction, making it unable to do its primary job of producing new blood cells. "Imagine a garden in which the seeds have been attacked by something and won't grow," says David Margolis, M.D., an associate professor of pediatrics at the Medical College of Wisconsin, in Milwaukee, and the pediatric oncologist who is treating Kailee. If new blood cells aren't constantly produced, the body's supply eventually dries up.
Though doctors don't know for certain what causes the disease, theories abound. Aplastic anemia has been linked to environmental toxins, and Linda wonders whether Kailee was somehow, somewhere, exposed to poisonous chemicals. A virus is another possible culprit. "We took her to Australia last year--maybe she caught an infection while walking on the beach," Linda speculates.
Aplastic anemia may also be linked to heredity (it appears to be more prevalent in Asian populations), but Kailee's family medical history is a complete unknown. "The only thing we know is that she was abandoned on the steps of the Teacher's Training Institute in Chengdu, China, at 10 days old," Linda says.
Since Kailee's diagnosis, her family has been desperately trying to learn more. They've been in contact with Chinese officials, and the newspapers in Hunan province have run pictures and stories about Kailee's plight. "We're praying that her biological mother or some other family member will come forward," Linda says. But the Wellses know that's unlike-ly: In China, it's illegal to abandon a child, and anyone admitting to it would face huge fines and possibly imprisonment, as well as shame.
A search for the top experts in aplastic anemia led the Wellses to the Children's Hospital of Wisconsin, in Milwaukee. So Linda quit her job, withdrew Kailee from school, and moved to that city with her daughter last May. The two have since been living at Kathy's House, a comfortable residence for families undergoing treatment at local hospitals. They share a hotel-style suite furnished with two double beds, a TV, and a telephone that Kailee uses each night to talk to her dad at home. Their days are spent shuttling to and from the hospital for a seemingly endless regimen of tests and treatment.
"This girl has been a real trooper," says her mom during a recent check-up. Kailee is sitting placidly while a nurse draws blood through a catheter in her chest, implanted to eliminate the need for more needle pricks. Afterward, Kailee grabs a rubber glove and a bandage and scoots off to play doctor with a friend on the ward.
Initially, Kailee's disease was treated with Atgam, a type of antithymocyte globulin (ATG) that's derived from horses. The drug suppresses the immune system, which is believed to be the source of the cells that attack the bone marrow. Treatment was brutal: It kept Kailee in the hospital for 14 days and left her weak, tired, and prone to infection. Steroids caused her small body to puff up and rendered the normally sweet girl cranky and irritable.
It was all for naught: Kailee did not respond to the treatment, and the disease continues to destroy her blood supply. The next line of offense is Thymoglobulin, a more powerful form of ATG derived from rabbits. But Dr. Margolis says it's likely that Kailee will ultimately need a bone-marrow transplant, the final weapon in the battle against aplastic anemia. "But we'll only be able to do that if we can find an appropriate donor," he says. "And that's a very big if."
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."
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.
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.