August 27, 2008

Potential Marrow Donors Sought for Hayward Boy

By Eric Kurhi

In the driver's seat of his miniature orange NASCAR-style racer, little Stephon Cinsear Williams is hell on wheels.

The 3- 1/2 -year-old owned the outdoor pathways in front of his apartment in the Hayward foothills, ramming through plastic toys and nearly running over his mother's toes.

"He's getting into everything," said Nicole Williams, 24. "He's just been so happy to be back from the hospital."

The boy, who goes by the name Cinsear, just came back Monday after his latest round of chemotherapy. The kid's a fighter: Since May, he's battled mononucleosis, fevers reaching 107 degrees, mouth sores that prevented him from eating and an often fatal condition that affects one child in a million.

It all started after a dip in the swimming pool at the day care center he attends. Cinsear broke out in hives and a fever soon afterward. Doctors thought he had a minor virus that would quickly go away.

It did not. Shortly after returning to day care, Cinsear's temperature skyrocketed and he was rushed back to the hospital. After more weeks of treatment, a team of doctors diagnosed the boy with a rare disorder called hemophagocytic lymphohistiocytosis, or HLH.

It's an autoimmune disease that involves white blood cells confusing healthy cells with the enemy and attacking them.

"When we saw the images of what was going on, it looked like Pac Man chomping through his other blood cells," said his father, Stephen Williams.

Cinsear has regained his energy, and steroids he took helped him gain about 10 pounds during his hospital stay.

But he's far from healthy. He's still needs weekly chemotherapy sessions, and blood transfusions every two weeks. He'll need them until he gets a bone marrow transplant -- the only way to cure his disease.

"They say that unless a match is found, kids with HLH don't live past 10," Stephen Williams said.

To that end, there will be a blood drive and bone marrow registration for Cinsear on Friday at Youth Uprising in Oakland. The Williams family is hoping that people will stop by and be entered in the worldwide database of 7 million possible marrow donors.

"At this first step, it is only a cheek swab that is needed, plus filling in the consent form," said Cynthia Carlson of the National Marrow Donor Program.

There are a lot of myths regarding donating marrow that need to be dispelled, in particular that it is a very painful process and that it costs the donor money, Carlson said.

"The procedure done most of the time ... is similar to a blood donation," she said.

There is a dire need for minority donors, who are underrepresented in the database. Ethnicity is key in making a match, and only 30 percent of patients in need of marrow find a donor within their family. The rest depend on the database.

Blacks have about a 60 percent chance of finding a match, compared with 88 percent for Caucasians.

Through the database, Cinsear has learned of one potential match in the country, and three more internationally. The family is still waiting to see if any of those will be available to go through with the process, and that's also a crapshoot. According to the donor program, that fails more than 50 percent of the time.

Nicole Williams said she was discouraged from participating in marrow drives by doctors, who told her that it takes a lot of effort and rarely pays off.

She disregarded their advice, and has already had two drives and plans for more later this summer in San Francisco and Antioch.

They've had a good turnout so far, and she's happy if people sign up even if they don't match her son. Nicole Williams said ultimately there's a higher power involved.

"I told the doctors, 'It's not up to what you've seen. It's up to the man upstairs," she said.

Eric Kurhi covers Hayward. Reach him at [email protected] or 510-293-2473.HOW TO HELP-- WHAT: Blood drive and bone marrow registration for Stephon Cinsear Williams, a 3-year-old Hayward boy fighting a rare autoimmune disease-- WHEN: 11 a.m. to 4 p.m. Friday-- WHERE: Youth Uprising, 8711 MacArthur Blvd., Oakland-- COST: Free for minority donors, who are in demand; $30 for Caucasian donors. Blood donations are free for all. Potential marrow donors must be between ages 18 and 60. -- INFO: Visit for additional information. To make an appointment to donate blood, call 1-800-448-3543.

Originally published by Eric Kurhi, The Daily Review.

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