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The Honolulu Advertiser
Posted on: Sunday, January 7, 2007

LOVE STORIES
Couple overcomes mystery illness

By Catherine E. Toth
Advertiser Staff Writer

Jennifer Kieu Hanh Nguyen and Chad Yutaka Kawamura met on a blind date in San Diego in 1998. Love grew, overcoming distances, and later, Nguyen's life-threatening illness. The couple wed in 2005.

Reve Photography

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‘PRIMETIME: MEDICAL MYSTERIES’

Includes Then Nguyen’s story

9 p.m. Wednesday

KITV

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Last September, Chad Kawamura made good on a promise he had made to his wife, Jennifer Nguyen, six years ago: They'd get certified to scuba-dive.

"The whole time we were dating, I'd bug him about it," said Nguyen, 34, laughing.

As newlyweds in search of a honeymoon destination, Kawamura thought it would be a perfect time to get certified.

"Now we had options," said Kawamura, 31, a software engineer originally from Mililani who now lives in San Diego. "

Then Nguyen, 33 and healthy, had a stroke.

"She was watching TV in the bedroom and wanted to tell me about something she saw," Kawamura recalled. "She was slurring" her words.

Nguyen had no idea what was happening to her.

"I didn't even know I was slurring," she said. "I didn't have any pain."

Kawamura rushed Nguyen to a hospital, where she stayed for several days.

After a series of tests, Nguyen was diagnosed with moyamoya disease, a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. (Moyamoya means "puff of smoke" in Japanese and describes the tangle of tiny vessels formed to compensate for the blockage.)

MEDICAL SETBACK

Only 1 in a million Americans is diagnosed with the disease, which primarily affects children but can also occur in adults.

What Nguyen was experiencing was a hemorrhagic stroke due to recurring blood clots in the affected brain vessels.

"I had never heard of it before," Kawamura said.

Adults with this disorder typically have disturbed consciousness, speech deficits, involuntary movements and vision problems.

Without surgery, most people with moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of the arteries. Death usually results from brain hemorrhage.

Nguyen decided to have surgery — a superficial temporal artery to middle cerebral artery bypass operation that would provide an alternative blood supply to the brain.

Last November, Nguyen was admitted to Stanford Hospital & Clinics to have the surgery done. Kawamura stayed by her side for the entire 2 1/2 weeks.

"I'm feeling fine now," said Nguyen, who was resting in Mililani with Kawamura and his family. "I'm tired, and I'm still trying to heal. (But) I'm OK."

Nguyen's story, from her stroke last year to the STA-MCA surgery last month, will be part of ABC's "Primetime: Medical Mysteries" program on Wednesday.

BLIND DATE

To say it was a learning experience would be an understatement.

Not only did the couple learn firsthand about a rare disease, they learned a lot about the importance of a strong, supportive relationship.

"We're a lot closer now," Kawamura said. "It was pretty traumatic."

The two met on a blind date on Sept. 11, 1998, in San Diego.

Kawamura was working with Nguyen's older sister, Yen Macaluso, in Virginia. When he went to San Diego to work for a month, Macaluso told him to call Nguyen.

Not knowing anyone in San Diego, Kawamura called her. And without ever meeting, they arranged to have dinner at a Thai restaurant in La Jolla.

The food was bad, but the conversation saved the meal.

The next week, they went to the San Diego Zoo — with her entire family — and then out to catch a few movies. It wasn't a love connection yet, but a friendship was growing.

The day before he was heading back to Virginia, Nguyen took Kawamura to Tijuana. (He was on a mission to find cheap coffee liqueur.) On the walk back, they held hands.

"I liked that she was funny and really generous," Kawamura said. "She was fun to be with and talk to. She's very opinionated — and I liked that!"

That November, Kawamura went back to Virginia, but the two stayed in touch. He invited her to join him and a friend in Reno to snowboard after Thanksgiving. Nguyen, who loves to ski, jumped at the chance.

Still, they were just friends.

But the next month, on a trip to Colorado, things changed.

"It was just the two of us," Kawamura said. "That's when the whole relationship started."

'MUTUAL' ENGAGEMENT

From that point on, the couple talked on the phone every day, racking up $200 phone bills every month.

For three years, they lived in different states, flying back and forth at least six times a year to see each other.

Finally, in May 2000, Kawamura got a job in San Diego. Nguyen flew to Virginia, and the two drove cross-country to California.

They stopped at Niagara Falls on the Ontario side, watched fireworks in Chicago, visited Mount Rushmore in South Dakota and camped at Yellowstone National Park.

"And we didn't kill each other!" Nguyen said, laughing.

The arrived in San Diego in July 2000. Kawamura moved into a five-bedroom home with a few roommates. Within a few weeks, Nguyen had moved in, too.

"There was no discussion," Kawamura said. "Her stuff was there, and she was there every night."

They talked about marriage, but Kawamura wanted to buy a house and get his master's degree first.

Two years later, Kawamura closed the deal on his first home. But going to graduate school wasn't in the near future. And Nguyen was getting antsy.

The next year, she gave him an ultimatum: Propose by the end of 2003 or the relationship is over.

"I wasn't happy about that," Kawamura said. "So I made her wait."

On the last day of 2003, he walked over to Nguyen, who was sitting at a desk in the living room. He wrapped his arms around her and said, "Let's get married."

No bended knee, no dozens of roses, not even a ring.

Instead, Nguyen got shares of a mutual fund.

"The whole time we were dating, she kept saying, 'I don't want a ring. I'd rather have stock,' " Kawamura said, laughing. "I thought that was great."

The couple married on June 18, 2005, at St. Alban's Chapel, 'Iolani School, which Kawamura had attended. Their reception was at the Royal Hawaiian Hotel. About 200 guests attended.

The disease may have disrupted their honeymoon plans. But they can't deny the experience strengthened their relationship.

"Couples should cherish every moment they have with each other," Kawamura said. "You never know when your lives will take an unexpected turn."

Reach Catherine E. Toth at ctoth@honoluluadvertiser.com.