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The Honolulu Advertiser

Posted on: Friday, November 12, 2004

Teen fights for life as 186 offer to help

By Robbie Dingeman
Advertiser Health Writer

Even as nearly 200 people turned out yesterday at Kawananakoa Middle School in the hope they could provide a critical bone marrow transplant, the teen they were trying to help was in a hospital, ill from complications of a rare disease that threatens his life.

Dominique Martinez, 21, gives blood to see if her bone marrow is a match for three young brothers who attend Kawananakoa Middle School.

Gregory Yamamoto • The Honolulu Advertiser

By the end of the day, 186 potential donors had signed up, drawn by two days of sign-waving by hundreds of Kawananakoa students and an Advertiser story about their effort to help 13-year-old classmate Kevin Nguyen and his older brother, Tuan, 15.

Both have a rare inherited blood disorder, as does younger brother Anthony, 11. But Anthony isn't yet eligible for a transplant, and Kevin's need is the most urgent.

Mother Lani Nguyen said that Kevin, a seventh-grader at Kawananakoa, spent the week in Kapi'olani Medical Center for Women and Children because of problems with his liver and spleen.

"He can't eat, he can't drink," she said.

Anthony Nguyen, 11, suffers from the same rare blood disorder as his two brothers.

Gregory Yamamoto • The Honolulu Advertiser

Nguyen, who is a single mother, said doctors have told her that she can be a liver donor for Kevin but he first must receive a bone marrow transplant.

Among those signing up to see if they might be a match for the boys included the parents of a Kawananakoa student, a Vietnam veteran and a young Liliha woman who has seen what a transplant can do.

Kapi'olani Community College student Dominique Martinez, 21, remembers how stressful it was to have a family member needing a transplant. She has an uncle with leukemia who found a donor match. "He's doing so much better," she said. "I was hoping I could give back."

Martinez also attended Kawananakoa and said she feels a natural empathy for the Nguyens. So when she read about the boys' needs, she decided to sign up.

Veteran Gordon Maemori, 54, a McCully resident, decided that the time was right to sign up as a potential donor. Maemori served in the Army's 25th Infantry Division in Vietnam during his 1969-73 stint.

Potential donors fill out registration forms at Kawananakoa Middle School where the school held a bone marrow donor drive for brothers Anthony, Kevin and Tuan Nguyen.

Gregory Yamamoto • The Honolulu Advertiser

Now a sandblaster at the Pearl Harbor shipyard, Maemori figured the federal holiday provided the right opportunity to volunteer. "I thought I'd give it a try," he said.

Alison Ohata said her Kawananakoa seventh-grader, Rochelle, got her and her husband to sign up.

A craft fair, food, games and booths and entertainment from singer Sonya Mendez helped attract hundreds of people to the campus on the Veterans Day holiday.

But the biggest draw was the chance to help the Nguyen family. All the boys in the Nguyen family have the disease, which is called Hyper IgM Syndrome. Sister Natalie, 8, does not have the disease.

Kevin has suffered liver damage and has an enlarged spleen and weighs less than 60 pounds. Tuan, a sophomore at McKinley High School, is awaiting a transplant but his need is less urgent than brother Kevin's.

The personal stories of the Nguyens and others who need transplants tend to bring out the most people to drives. But Hawai'i Bone Marrow Donor Registry recruitment coordinator Roy Yonashiro said there are many who can benefit nationwide.

Lani Nguyen shares a moment at the benefit with son Anthony and daughter Natalie.

Gregory Yamamoto • The Honolulu Advertiser

Yonashiro said the boys are among about two to three dozen people in Hawai'i looking for a transplant each year and about 3,000 people across the country seeking a match. "Nationally, 25 people die every day because a donor can't be found," he said.

Yesterday's drive was one of the year's largest, taking to 750 the total number of new potential donors since September, when the registry first publicized the Nguyens' need. A drive at the University of Hawai'i signed up 225.

Now begins 10 to 12 weeks of waiting to find out if a blood sample is a potential match. That's because samples must be sent to a Mainland lab for tissue typing and processing before the information goes into a nationwide database.

Alison Ohata said her daughter also asked her to pass out fliers at her workplace, which she did. "We really hope that they will be able to find a match for the boys," Ohata said.

Reach Robbie Dingeman at rdingeman@honoluluadvertiser.com or 535-2429.

• • •

How to donate

To sign up as a bone marrow donor, you must:

• Be between 18 and 60 years old and generally in good health.

• Have a finger stick to provide a blood sample that will be sent for tissue typing to test for potential matches.

• Be willing to donate not knowing whom you will match.

• Provide two contacts to help the registry be able to locate you if a match is found.

For more information, call the registry at 547-6154 or check on the Web at www.marrow.org.

Source: Hawai'i Bone Marrow Donor Registry