This article was in People recently....Saving Kailee, and Beyond
Jill Smolowe, Lauren Comander. People. New York: May 15,
2006.Vol.65, Iss. 19; pg. 101, 3 pgs
[Headnote]
Desperate for a bone marrow donor for their child, Linda and Owen
Wells found one in China-and saved hundreds of other lives in the process
First day back from spring break at her elementary school in
Shorewood, Wis., 9-year-old Kailee Wells played on the tire swing,
lined up in the hall with her class and wished she could eat the
school lunch instead of the one she had brought from home. Ordinary
stuff, by most kids' standards, but for Kailee-who has spent much of
the past four years in the hospital-April 24 was the beginning of a
new life. "It was an awfully big day," says her father, Owen Wells.
And something of a miracle-given that six months ago Kailee was
losing her battle against a rare blood disorder. She owes her
recovery to her fighting spirit-and the tenacious efforts of her
parents, Linda and Owen Wells, who adopted her from China in 1998. In
need of abone marrow transplant, Kailee came up against a harsh
reality facing Asian-Americans and other minorities in this country:
a shortage of genetically similar donors (see box). Determined to
find a match for Kailee, the Wellses launched a global search that
saved Kailee's life-and helped to add some 300,000 names to the donor
rolls in China and 4,000 to the U.S. registry. Owen says that has
resulted, so far, in more than 280 life-saving matches, most of them
in China. "The Wellses have made one of the largest contributions to
the registry," says Dr. Jeffrey Chell, head of this country's
National Marrow Donor Program.
But what drove the Wellses was their need to save the girl they'd
traveled halfway around the world to adopt. Linda, 54, an attorney,
and Owen, 55, who owns a graphic design and printing firm, first
decided to adopt in 1996, on their 15th anniversary. Two years later,
with three biological kids grown, they traveled to Changsha to meet
Kailee, who was so healthy "she never had a cold," says Linda. Then,
on her fifth birthday, Kailee started to bleed from her nose, eyes
and ears. When doctors delivered a diagnosis of severe aplastic
anemia-a disease that stops bone marrow from producing red or white
cells and the platelets that enable blood to clot-they gave Kailee a
20 percent chance of survival.
A month later, while still hoping for a match from the marrow
registry, Owen told Linda he was going to launch a donor drive in
Albuquerque, N.Mex., then their hometown. Marrow registry
representatives warned Owen that the odds of finding a match were
very slim and he needed to save his time and energy for his daughter.
Linda tried to talk him out of it, but Owen was resolute. "I couldn't
just sit there and not do anything," he says. When he raised $13,000
(largely from his clients) and attracted 543 people, Linda got on
board. It would be the first of about 50 such drives that Owen and
Linda would lead in the U.S. and abroad.
Soon, though, caring for Kailee became a full-time job. In and out of
the hospital for transfusions, she couldn't attend school because the
risk of infection was too high. In May 2002, after Linda folded her
law practice, she temporarily relocated with Kailee to Milwaukee to
be close to Dr. David Margolis, a specialist at Children's Hospital
of Wisconsin; Owen remained behind, building up a Web site to find
donors. Soon gifts and e-mails poured in from more than 100
countries. Kailee disliked opening the gifts. They reminded her, says
her mom, "that she was at risk of dying." Linda, meanwhile, found
herself angry at having to answer the e-mails. "I'd get 300 e-mails,
not because I was famous but because my child was at risk of dying."
But Owen was insistent. "I said, 'Honey, we're going to save our
little girl. You have to do this,'" he recalls.
By now Kailee was grappling with her own mortality. She would ask to
visit cemeteries and talk about skeletons and cremation. "There was
another time that hits me hard," says Owen, his voice cracking.
"Kailee and Linda were making Kailee's birthday cake. Out of the blue
Kailee said, 'Mommy, I'm going to miss you when I die.' "
In November 2003 Linda traveled to China to seek out new donors. "One
of the hardest things I've had to do was leave Kailee while she's
sick," she says. Poised before a 30-ft.-tall picture of Kailee, Linda
held a press conference in Beijing. That week China's donor registry,
instead of adding 14 new names as usual, enrolled 10,000.
The trip was cut short when Linda got a call-Kailee had been admitted
to the hospital for uncontrolled bleeding. At that point the Wellses
decided to make a permanent move to Wisconsin. Far harder was the
decision to let a transplant go forward with a less-than-perfect
match-a risky procedure with a limited chance of success. Following
chemotherapy, the transplant took place in January 2005; two months
later Kailee's body rejected the marrow. In an online journal, a
distraught Linda wrote, "It feels like a death sentence. . . .
[Kailee] rolled around the hospital bed, sobbing, screaming until IV
morphine brought temporary relief. It was agony."
The Wellses prepared to leave for China again-this time to make a
needle-in-a-haystack search for Kailee's birth parents. The day
before they were to leave, astounding news: An ideal match for Kailee
had been found in China, a young man in his 20s. "Your love for your
child has touched our country's people," he would later write the
Wellses. On Nov. 7, as the donor's stem cells flowed into Kailee's
body, she told her parents, "It tastes like peaches." Today, though
her health is still fragile, Kailee has "an excellent prognosis," Dr.
Margolis says, with the odds of a normal life finally in her favor.
So the energetic little girl isn't wasting a moment, having limited
playdates and playing on the monkey bars, though her blood tests are
being watched closely to make sure a fall doesn't pose a fatal
danger. "We're starting to let her be a child again," says Owen, who
is busy helping with the national registry's donor drive in 109
cities from May 12 to May 14. "Even when Kailee is completely
healthy, I'm not going to stop," he says. "I'm too motivated."
[Sidebar]
Owen with Kailee at Children's Hospital of Wisconsin last November.
[Sidebar]
For a planned 2005 trip to China, Linda printed up thousands of
posters (lower right) of Kailee (with Linda and Owen at home in April).
"They told us, don't waste your time with a drive. But I had to try"
-Owen Wells
[Sidebar]
"She's a very smart child. She knew all along how serious this was"-Owen Wells
[Sidebar]
Kailee at age 2.
[Sidebar]
For more about the program, go to www.marrow.org. For more on Kailee,
go to www.kaileegetwells.com.
[Sidebar]
Despite a few post-transplant setbacks, Dr. David Margolis says that
Kailee (at school cm April 24) is "doing very well."
NEEDED: MINORITY DONORS
More than 6 million volunteer donors are registered with the National
Harrow Donor Program in the U.S. Because Asians and other ethnic
groups trace their roots further back in time than Caucasians, there
is more variability in their gene pool. "We need many, many more
minority volunteers to give everyone an equal chance to match," says
program head Dr. Jeffrey Chell. To register, volunteers provide a
cheek swab or blood sample. Below, some donor registry numbers:
* 402,000
(Asian)
* 467,000
(Black/African American)
* 400,000
(Hispanic/Latino)
* 3 Million
(White)
Know a hero? Send suggestions toheroesamongus@peoplemag.com. Please
include your name, phone number and return e-mail address.
[Author Affiliation]
By Jill Smolowe. Lauren Comander in Shorewood
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