Boy stays positive through ordeal

Two years ago, 12-year-old Cody Sugai’s typical preteen routine of school, playing video games and basketball was put on hold after he experienced a headache during classes at Hawaii Baptist Academy.

The headache went from mild to severe and had him screaming in pain as his mother, Jeanette, rushed him to the emergency room at Kapiolani Medical Center for Women and Children.

The headache was caused by a sudden onset of bleeding in Cody’s brain and doctors determined that he had been born with arteriovenous malformation, or AVM, an abnormal collection of veins and arteries in his brain.

The pressure from the bleeding rendered him comatose. Because of the location of the AVM, traditional brain surgery could not be performed, so a gamma ray knife (no blade) radiation treatment was used.

He recovered from the coma, 2 1⁄2 weeks later, and his father, Scott Sugai, was relieved. "When he woke up, I thought everything would be OK," he said.

That was not the case. He had to relearn everything, starting with eating and drinking.

"Drinking water was dangerous," Scott said. "They had to thicken the water so he wouldn’t choke."

Other trials involved learning to sit, talk, stand and walk. It was a huge step forward when he was able to walk around the bed.

He spent 2 1⁄2 months in the hospital, and Scott said, "Every day, we saw a little more progress."

Cody worked with speech, occupational and physical therapists two times daily during his hospital stay. His hard work and positive attitude paid off when he was named Hawaii’s 2012 Children’s Miracle Network Ambassador. In September, he will travel to Washington, D.C., to share his story and advocate for the hospital. He will also make an ambassador trip to Orlando, Fla., and is looking forward to visiting Disney World. "I represent the hospital, but get to go on really fun trips," he said. "I’m a celebrity guest."

The Children’s Miracle Network Hospitals Champion program honors children, like Cody, who have triumphed despite severe medical challenges and display a sense of leadership and inspiration.

As an ambassador, he will also make appearances at Costco and Wal-mart and also traveled to Maui a couple of times to raise awareness for the 17 million children treated annually at Children’s Miracle Network hospitals.

Cody has found his "new normal" and doesn’t dwell on what he cannot do.

"He always finds different ways to do things," Scott said. "He’s been so positive through all of this."

He’s figured out how to wear slippers by attaching a Velcro strap and continues to participate in activities he enjoys. His friends help him do things that he can’t manage.

On meeting him, it’s hard to imagine that this young boy went through such a difficult ordeal. Although he wears a brace on his foot because he has little control over his ankle, his positive energy and big smile are contagious. His motto: "Never give up and always stay focused on your goal. I believe whatever you put your mind to is possible."

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“Be Well” features inspiring stories of people dealing with health challenges. Reach Nancy Arcayna at narcayna@staradvertiser.com or call 529-4808.