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A Close- Up Look At People Who Matter : Boy Confronts Health Limits With Humor

July 04, 1996|ED BOND | SPECIAL TO THE TIMES

The slow tick . . . tick . . . tick . . . in Matthew Rudes' chest is an artificial heart valve implanted in February, yet another brush with mortality.

Matthew, 10, of Northridge, charges 50 cents for anyone who wants to listen. It is one of the funny, matter-of-fact ways that he copes with Marfan's syndrome, a condition that attacks cells in his body, causing spontaneous spurts of growth and leaving him legally blind.

When his heel bones started growing last year, Matthew was confined to a wheelchair until surgeons could remove the excess and place 6-inch steel pins in each foot. When they were eventually removed, the pain felt "like jumping off a cliff four times and landing on the rocks," Matthew said.

"A lot of things in my life don't scare me," Matthew said.

Thick, special lenses allow him to see. He walks with difficulty and must use leg braces. But, even though he has no control over how his body grows, Matthew uses a creative mind and outgoing personality to take charge of almost everything else in his life.

"He makes everyone tell him what they are going to do," said his mother, Carol, a freelance graphic artist and desktop publisher who sees her primary job as being Matthew's medical manager. They both quiz medical professionals extensively to understand what is happening.

And Matthew--in the gifted program at Andasol Elementary in Northridge, where he just finished the fourth grade with all A's--usually tries out riddles on doctors before letting them examine him.

Winner of his school's outstanding citizen award, Matthew also likes to tell jokes, tease friends and teachers, and cite facts and trivia off the cuff.

"He is so mature beyond his years," said Sandy Cohen, a teacher of the visually handicapped for the Los Angeles Unified School District who has worked with Matthew since he was in the first grade. "When you sit and talk to him, you don't feel like you are talking to a 10-year-old."

To Cohen, Matthew is a sponge for information who creates his own projects in school and reads at least at the sixth-grade level. For fun, he builds spaceships and railroad engines out of K'Nex, a building toy.

He also created a monster named Bob.

Bob is a central character in a short story Matthew is writing on a computer equipped with a voice synthesizer. The monster has three horns, a tail 5 yards long, a stinger and claws. Bob can also jump in and out of dreams.

"He's got a wonderfully creative mind," Cohen said.

His is a mind that likes to reverse the problem of being stared at. "I'll stare back," he said. " 'Oh, Mom, look at the person who's regular!' "

Beginning July 14, he and about 100 other visually handicapped elementary school-age children will attend Camp Bloomfield in Malibu, a 10-day summer program run by the Foundation for the Junior Blind that offers swimming, archery, gymnastics and street hockey.

"I've had campers tell me, 'This is the place where we can get chosen first for the team,' " said Dena Schulman, a spokeswoman for the foundation. She said they also say, "This is the place where we are not babied and talked down to."

Patronizing is one thing Matthew will not tolerate. According to Cohen, the youngster's attitude says: "I'm OK. I don't want to be treated different."

Personal Best is a weekly profile of an ordinary person who does extraordinary things. Please send suggestions on prospective candidates to Personal Best, Los Angeles Times, 20000 Prairie St., Chatsworth, 91311.

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