Boy with rare blood disease dies at 17
What ever happened to the three brothers who needed a bone marrow transplant to survive a deadly blood disorder?
Answer: Despite an outpouring of support and residents registering for bone marrow donation, the eldest of the three Nguyen brothers, Tuan, died Oct. 12 at Kapiolani Medical Center. Just 10 days before his death, he turned 17.
His brothers, Kevin and Anthony, are still stricken with the rare and fatal genetic disease Hyper IgM syndrome, which weakens the body's ability to fight off infection.
Without a bone marrow transplant, sufferers of this disease rarely reach 30 years of age. As their disease progresses, relatively minor infections can prove deadly. Their sister Natalie also carries the disease; however, it does not affect females.
The Hawaii Bone Marrow Donor Registry at St. Francis Medical Center has been searching for a donor match for more than two years, and still no luck, said Cindy Ta, who has arranged bone marrow drives for the family.
The three boys, who are Vietnamese, are sons of single mother Lan Nguyen. Ta said because matches are more likely between people of the same ethnic background, the drives have been focused in more immigrant-heavy communities, like Chinatown or Palolo.
Tuan, who dreamed of being a doctor, was concerned only about his brothers' health before he died, Ta said.
"He just wants his death to mean something, to motivate people to at least enter into the registry," Ta said.
"It would be a great honor for Tuan if his death can serve to remind the public about the continuing need for bone marrow donation so that other lives can be saved."
For more information on becoming a donor, or to update information for an earlier registration, call 808-547-6154 or visit www.stfrancishawaii.org/hawaiibonemarrow.
This update was written by Gene Park.
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