THE VIRGINIAN-PILOT
Copyright (c) 1994, Landmark Communications, Inc.
DATE: Sunday, July 3, 1994 TAG: 9407020128
SECTION: SUFFOLK SUN PAGE: 08 EDITION: FINAL
SOURCE: BY FRANK ROBERTS, STAFF WRITER
DATELINE: SUFFOLK LENGTH: Medium: 83 lines
MICHAEL BROUGHT a book to school, Jeanine a stuffed animal. Brockton brought his Oakley sunglasses, Rachel Short brought her sister, Madison.
Madison is one in about 120,000 children born with holoprosencephaly.
``Instead of a right and left sphere to the brain, they're fused,'' her mother, Wendy, explained. ``It's a birth defect - brain deformation that resulted in cerebral palsy six months after she was born.''
Madison has gone to school twice, the first time when her sister was in the first grade in Chesapeake, the second time when Rachel was a Robertson Elementary third-grader.
``I showed the kids how I feed Madison and I showed 'em how the oxygen machine works,'' Rachel said. ``Madison's disabled. She's not gross. She's different.''
The first thing people notice about Madison is that the 5 1/2-year-old is a sweet, easygoing child whose lovely smile seems constant.
``She knows what's going on around her. She plays hide-and-seek by stiffening her body, getting out of bed and crawling under. If she sees someone fall, she laughs. Tell her she has stinky feet and that makes her laugh,'' Wendy said, adding with a grin, ``she has a warped sense of humor.''
Rachel, an understanding, compassionate 9-year-old who cares for her sister, both literally and figuratively, expressed her love in print. Rachel's book was a citywide third-grade winner in non-fiction in this year's Suffolk city school's Young Author's Competition.
She told Madison's story in words, illustrations and with photographs in ``My Special Sister,'' dedicating the book to ``my beloved sister.''
``My sister is handicapped. Madison has brain damage so she cannot walk, talk, read or write. She is trying to walk by a special walker.''
In walker or wheelchair, Madison needs straps to support her upper body ``because,'' Wendy said, ``she has no control there.''
``My sister cannot eat through her mouth. She eats (special food four times a day) through a button in her stomach.''
Madison undergoes chest therapy three times a day, a vital function because she cannot expel mucus, a situation similar to cystic fibrosis.
``Her lungs could get congested and that could go into pneumonia,'' said Wendy, who lives in Driver with her husband, Danny, the girls and 22-month-old Drew.
Madison gives a lot of attention to her coloring books.
``Madison can color, but it is not exactly the coloring we do.''
It is a thrill to watch her, particularly when the family remembers some medical professionals telling them she would never be able to do anything like that.
``Take her home, love her, but she will be no more than a vegetable,'' one doctor told the Shorts.
Another reason for the physician's bleak outlook is that Madison had a mild seizure disorder, which was wrongly expected to result in profound mental retardation.
``When Madison was born, the doctors said she had only six months to live. But Madison is stubborn and a fighter. The doctors are very surprised at how well she has done. They say she is a miracle child.''
Rachel illustrated that passage with a drawing of a gloomy-looking doctor and a sad-looking baby, followed by a drawing of a smiling, older child and a smiling doctor.
Madison graduated from special classes at Kilby Shores Elementary School and will go to special kindergarten classes at Booker T. Washington.
``She surprises me. She surprises everybody. She's done remarkably well,'' said her physician, Dr. George Koehl of Pediatric Associates in Norfolk, who describes Madison's chart as ``three inches thick.''
``Madison is stable at this point,'' Koehl said. ``A lot of people didn't anticipate she'd see 5 1/2,'' he said, crediting the long-on-love Short family. ``They had a lot to do with Madison's success. They carry on with her, involve her with everything they do.
``She can respond with no more than her smile and the sparkle in her eyes,'' Koehl said. ``I have a hundred pictures of kids on my filing cabinet. Madison's eyes sparkle.''
``Madison loves children and she likes smiling at people everyday.'' ILLUSTRATION: Staff photo by JOHN H. SHEALLY II
Rachel Short is the third-grade winner in non-fiction in Suffolk
city school's Young Author's Competition for the book she wrote
about her sister, Madison, who has cerebral palsy.
by CNB