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Sunday, September 5, 2004



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MARY VORSINO / MVORSINO@STARBULLETIN.COM
Anthony, left, Kevin and Tuan Nguyen suffer from Hyper IgM Syndrome, a rare disease that can only be cured by a bone marrow transplant at this stage of their disease.




3 brothers in need
of marrow transplant

One could die within
a year if their drives
are unsuccessful


The three Nguyen brothers are a lot alike.

They love violent video games, have a passion for pizza and suffer from a genetic disease that's destroying their immune systems and slowly killing them.



SEARCHING
FOR DONORS

Bone marrow drives for Tuan, Kevin and Anthony Nguyen:

>> Tuesday from 10 a.m. to 2 p.m. at The Shops at Dole Cannery
>> Thursday from 8 a.m. to 2 p.m. on the second floor of the University of Hawaii Campus Center
>> Sept. 12 from 8 a.m. to 3 p.m. at Chinatown's Kekaulike Mall
>> Sept. 23 from 5 to 9 p.m. at the annual Vietnamese Festival in Kapiolani Park

For more information, contact the Hawaii Bone Marrow Donor Registry at 547-6154.



One brother, 13-year-old Kevin, has been given a year to live. The others haven't fared much better.

Their only chance for a cure comes if they can find a bone marrow donor in a series of drives scheduled for this year, the first of which is set for Tuesday.

"They have been growing up sick," said the boys' mother, Lan Nguyen, through a translator.

The brothers were born with Hyper IgM Syndrome, a rare disease of the immune system that weakens the body's ability to fight off infections. As their disease progresses, relatively minor infections could prove deadly.

Without a bone marrow transplant, sufferers of Hyper IgM rarely reach their 30th birthday.

The oldest Nguyen boy, Tuan, attends ninth grade at McKinley High School. At 14, he's set his mind on becoming a doctor and says he's already gotten a lot of practice with the care he gives his younger brothers and himself, making sure they all take their medications and follow their physicians' orders.

"I have to worry a lot," Tuan said. "I'm still kind of scared if we don't make it."

At their Kalihi home yesterday afternoon, the brothers were giggling and goofing off. Anthony, 11, is the youngest of the boys. And when their mother wasn't looking, Kevin started a pillow fight.

"We're used to it (being sick)," Kevin said, adding that he tries not to think about his illness.

Kevin is the smallest and the weakest of the brothers. His abdomen is distended by a sickened liver.

Kevin, a seventh-grader who's behind in school because of lengthy hospital stays, wants to become a chef. He said he dreams about a life that's not as constrained as the one he's living now.

If he gets a bone marrow transplant, he said, maybe his mother would let him play outside more often because she wouldn't be worried about him catching a cold.

"I could do more things than I could do now," he said, before biting off a mouthful of pizza.

The three brothers are close. The sickness isn't their strongest bond. But the support they give each other to get through it is, they said.

"We'll make it," Tuan said, in a short-lived serious moment. "I want to know what's going to happen to me."

Cindy Ta, an organizer for the brothers' bone marrow drive, said the best chance for finding a donor is in Hawaii, where there are likely to be more Asian and Pacific Islander applicants. The highest likelihood for a match -- after siblings are ruled out -- is among those of the same ethnicity, she said. They are especially looking for people of Vietnamese descent.

Right now, Tuan and Kevin are priorities for a transplant. Anthony is healthier and younger, and so can afford to wait a little while longer.

The boys also have an 8-year-old sister, who is a carrier of Hyper IgM. She hasn't gotten sick because the illness affects only males.

The boys' mother said yesterday that Tuan and Kevin were diagnosed with Hyper IgM when she was two months pregnant with Anthony. Doctors told her to abort the pregnancy because there was a 50 percent chance that her youngest boy could also suffer from the disease.

It was the hardest decision of her life to keep Anthony, she said, knowing that he would likely have to go through a life of sickness just like his brothers.



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