CINDY ELLEN RUSSELL / CRUSSELL@STARBULLETIN.COM
Maile Ogata, 7, was born with Apert syndrome, which is characterized by malformations of the skull, face, hands and feet. Set to perform at tomorrow's "Maile's Dream" event, she is shown here practicing with Kelsi Julian-Araki, left, Cheyne Marshman, Jasmin Poroj, Jordan Luke, Maile Ogata, Alysha Tabije, Shauna Nichols, Kiran Vidinhar and Chasie Hirakawa. CLICK FOR LARGE
'Maile's Dream' involves friends
A fair showcases a girl's triumph over physical deformities
Cindy Ogata's dream was that her daughter, Maile, be treated like everyone else despite physical differences.
So the 7-year-old, who has a rare condition called Apert syndrome, will be among the performers at a fair in her honor from 9 a.m. to 3 p.m. tomorrow at Washington Middle School.
The school's student government is sponsoring the "'Maile's Dream' -- A Celebration of Differences" awareness fair for the third year.
Ogata formerly was a counselor at the school. The school "adopted" Maile when she was first diagnosed with the genetic condition, said student adviser Roxanne Kaino.
Apert syndrome occurs in about one out of every 160,000 to 200,000 live births (one birth every six years in Hawaii), according to Easter Seals Hawaii. It is characterized by "specific malformations to the skull, midface, hands and feet."
Doctors said it was caused by "spontaneous mutation of the 10th chromosome," Ogata said. Neither she nor her husband, Ernest, a Department of Defense employee, is a carrier, she said.
Ogata said she found another Hawaii resident, a cardiologist, through the Internet whose daughter also has the syndrome.
"That was my main support," she said. "We found doctors here didn't know what Apert was."
Now in second grade at Aliamanu Elementary School, Maile had six surgeries before her third birthday, her mother said. Five were at the University of California at San Francisco.
A sixth procedure was done by a Stanford University specialist on her fingers, which were fused at birth. She cannot bend them, but she can write and likes to draw, Ogata said.
Maile attended Easter Seals' Sultan Early Intervention Program and was out of special education by kindergarten, her mother said. "We want to thank Easter Seals for their service. She was delayed across the board."
She is doing well now, her mother said. "She's pretty well adjusted. We don't shelter her. ... She likes gymnastics class. She likes to play like any other kid. She wants to blend in. She'll figure out a way to follow."
She has been rehearsing with other children for Shirley Sypert's vocal and dance performance, "A Class Act," for the fair.
Other entertainment, food, displays and games are planned to promote awareness of differences. Any profits will be donated to Easter Seals.
Kaino said the school did various things to help Maile, then decided two years ago to put on a fair "that followed her mother's dream. We came up with the awareness factor."
Ogata left the school to become a licensed massage therapist because her daughter needed massage to get more movement in her fingers.
However, she visits the school often with Maile and talks to classes, Kaino said. "Her daughter has been a blessing in the sense that it allows her to talk about differences and how people should be treated the same no matter how they look."
Maile's skull is unable to grow normally, and her face from the middle of the eye socket to the upper jaw appears sunken.
She has trouble breathing at night when she is congested because "her pipe is very narrow," Ogata said, adding that Maile is on a special diet to prevent congestion.
Eventually, she said, her daughter will have to wear a device for a few months to pull her middle face forward.
She said she takes Maile back to California every year to see her doctors. "They give us a recommendation on the next step in her medical journey."