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'Dream' celebrates differences


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POSTED: Friday, April 10, 2009

Maile Ogata, 9, is practicing a poem that ends something like this: “;Don't you know it's not polite to stare?”;

The Aliamanu School third-grader has a rare congenital condition called Apert syndrome, characterized by malformations of the skull, midface, hands and feet.

She will perform at an awareness fair titled “;Maile's Dream: A Celebration of Differences”; from 9 a.m. to 2 p.m. tomorrow at Washington Intermediate School.

Washington Intermediate, where Maile's mother, Cindy, formerly was a counselor, “;adopted”; the child when she was first diagnosed with the unusual condition.

Cindy Ogata said the family “;borrowed”; from Martin Luther King Jr.'s “;I have a dream”; for a dream of their own — that people should not be judged by their physical differences but by their character.

Proceeds will go to Easter Seals of Hawaii's Early Intervention Program, which Ogata said gave her “;a shoulder to cry on”; and helped the family with physical, occupational and speech therapies during Maile's first three years.

Maile, who will be 10 in October, has had eight major surgeries — six before she was 3 — to correct cranial and other deficiencies.

“;We're kind of waiting right now,”; her mother said. “;We're not too sure when the next one is. We just know it's going to be a big one ... as soon as a big molar pops up. They will open up her skull so they can pull her face forward. We're not looking forward to that one.”;

Maile is missing teeth now and waiting for the permanent ones, her mother said. “;They're slow to pop in, I think partly because of her cleft palate. They're hiding behind the gums.”;

Maile is evaluated every summer by a craniofacial team at the University of California, San Francisco, where most of the surgeries have been done.

Her fingers, which were fused, were separated by a Stanford surgeon.

Maile is “;doing fine,”; her mother said. “;She likes to do arts and crafts, gymnastics and sometimes music class.”; She uses her wrist as a hook for gymnastics because she can't bend her fingers.

“;I wouldn't say it's a disability,”; Ogata added. “;It's an ability — you do what you can with what you've got.”;

Apert syndrome occurs in about one out of every 160,000 to 200,000 births (one every six years in Hawaii).

Maile is a good-natured child who is “;on the shy side”; but warms up and is playful when she gets to know people, her mother said. She wants to blend in with other children and people who know her accept her, Ogata said.

Children sometimes can be mean, she noted, which is one of the reasons for the special program at Washington Intermediate — to make people more aware and accepting of people with different challenges.

Among the performers will be Shirley Sypert's “;A Class Act,”; with Maile acting with Li'l Stars and Show Kids; Mitchell Kouchi, winner of Hawaii Stars of Extraordinary Abilities; and Ed Chevy, a hearing-impaired magician and member of an all-deaf rock 'n' roll band.

The program also will feature Tunui's Royal Polynesian dancers, a wheelchair basketball demonstration and the Joseph Wilcox Band with visually impaired performers and friends.

Food, displays, games and activities are planned in the free public event to promote awareness of physical differences, especially in children.

For more information, call Christine Routon at Washington Intermediate School, 973-0177.