Two Hawaii teenagers battle the same rare disease

They call themselves “Team Taylor” — two Hawaii teenagers who share more than just a name.

Together, they are fighting a rare and sometimes fatal disease.

Taylor Chee and Taylor Hiraki have known each other practically since birth.

Their parents know each other, they’re both 18-years-old, born just 18 days apart, and they’ve completed their freshmen year in college — Chee at the University of Nevada at Las Vegas and Hiraki at Pacific University in Oregon.

But that’s not all they share. Both Taylors are fighting Moyamoya Disease.

“When I first got diagnosed, I was devastated,” said Chee,” and I thought I was the only one here at my age that had this disease.”

Moyamoya Disease is a rare disorder caused by blocked arteries at the base of the brain. It affects 1-in-100,000 people. The word “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.

Chee’s symptoms surfaced in the form of migraine headaches, and things intensified in May.

“One day, when I was taking the trash out on a dolly, I walked right into the wall because my vision blacked out.”

In early June, she knew it was serious.

“June 4th is actually the day that I woke up and I couldn’t see on the sides of my head, like my peripheral vision was just gone.”

A series of MRIs revealed she had suffered several strokes. Taylor Chee was diagnosed with Moyamoya.

Taylor Hiraki’s symptoms surfaced on July 15 while she was working at a Hawaii Kai restaurant. She was rushed to the hospital after someone noticed she was acting strange.

“They were going to discharge me, but then I had another stroke in the hospital, so that’s what gave it away,” Hiraki said, “and then they ran like MRIs and they saw the little strokes in my brain.”

She, too, was diagnosed with Moyamoya. Two weeks later, she underwent the first of two successful surgeries at University of California at San Francisco.

Hiraki plans to return to college on Sunday. Chee, meanwhile, will have her surgery next month at Stanford University.

“I’m so grateful that our paths have realigned,” Chee said, “and it might have not have been in the best of ways, but at least we can lean on each other and go through it together and it’s just been amazing.”

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