Miracle boy

Ikaika Ka’ahanui has endured a great deal in his 10 years of life — 13, soon to be 14, major surgeries; 71/2 years living with a tracheotomy tube in his neck; 10 years and counting with a feeding tube in his abdomen; and moderate to severe hearing loss in both ears.

But despite all of that, the spunky fourth-grader sure knows how to bust a move.

Ikaika break danced on stage for thousands of people in Orlando, Fla., last month during a Children’s Miracle Network medal ceremony honoring him and 49 other 2013 U.S. "champions" named by local hospitals. Then, after receiving his medal, he flexed his muscles and smiled wide for the camera while energetically waving a shaka.

"We knew he did this, but we didn’t know he was going to do it in front of 2,000 people!" his dad said in an interview last week after proudly pulling out his smartphone to show a video of the playful display.

"That’s him over there in the red and he’s dancing … he’s break dancing. My wife and I are screaming going, ‘Oh, my God!’" Solomon Ka’ahanui said, chuckling. "You can hear me laughing in the background. It was the riotous thing. … He finally ends it, which I thought was great, with a shaka. He’s a ham."

Ikaika was born with several medical problems, the worst of which was a hole between his trachea and esophagus that required him to have a tracheotomy (trach) tube in his neck for most of his young life. Only a scar remains, but he is still in therapy learning how to talk and eat properly — human instincts he never had the advantage of learning on his own.

Each year, Kapiolani Medical Center for Women & Children chooses a child as its fundraising and awareness ambassador for the Children’s Miracle Network Champions program, and Ikaika was tapped to be this year’s Hawaii champion.

The inquisitive boy who bears a smile that melts hearts and sports a head of brown curls that bounce along with the excitement he exudes has had a busy year as the Hawaii champion, including meeting President Barack Obama, Miss America, Marie Osmond and other celebrities during last month’s annual conference with all of the champions and their families.

Ikaika’s parents recalled how Obama gestured to the center of the large group of kids, where their charismatic son was standing, during a question-and-answer session in front of the White House.

"I was like ‘hmm, oh no, here we go!’" Amanda Ka’ahanui said. "And he’s like, ‘Uh, when is the government going to open?’ And the president said, ‘Soon, I hope, real soon.’ And then the government opened the next day. … But it was a good question, so we were happy!"

Amanda Ka’ahanui is working on several scrapbooks to catalog Ikaika’s year as a Children’s Miracle Network champion. She excitedly thumbed through pages packed with photos and mementos to remember all of the events of the whirlwind trip that included stops at the Eastern Market to celebrate Ikaika’s 10th birthday on Oct. 13 and one of his favorite places — the Smithsonian Institution National Museum of Natural History.

"And guess what? I (saw) the elephant!" Ikaika said, jumping in to point at a picture in the scrapbook. "And crystals!"

"He loves rocks, he has a rock collection, so he was so excited to go in (that section)," his mom said.

As joyful, intelligent and upbeat as Ikaika is, life with a medically fragile child hasn’t always been easy for his parents. Ikaika, whose name means strong in Hawaiian, was born at Castle Medical Center and rushed to Kapiolani within hours, leaving his mother to spend the night at Castle confused and childless.

"It was really surreal because spending that night at Castle, you know, I’ve got no baby and no husband because he was making sure Ikaika got in over at (Kapiolani), so it was really scary," Amanda Ka’ahanui said. "The next day I was like, ‘Get me out of the hospital, I want out. My baby’s not here; I’m going where my baby is.’"

Amanda Ka’ahanui said that despite her son’s condition, he has always been the fun-loving, outgoing boy he is today.

"I didn’t actually really have to teach him to be confident in himself, he just is confident in himself and (has) never been self-conscious about it," she said. "Trying to get him to understand why kids sometimes back away from him is the hardest part for me as a mom because, you know, I want him to feel comfortable in his own skin."

Ikaika’s mom said the Children’s Miracle Network Champions program is great because the kids who are chosen help encourage others at the hospital and anyone they meet to face challenges with a smile.

"It’s really great for people to see kids that are, you know, special needs that are great in front of a camera or love to dance, (are) very social, and they’re not ‘Boo hoo, I’m sick’ all the time," she said.

"Kids are resilient and amazing, and he teaches us those lessons every day."

For more information on how you can help kids like Ikaika, contact Stacey Acma, director of Kapiolani Children’s Miracle Network, at 535-7121 or via email at kcmn@kapiolani.org.