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'Miracle' Boy Fights Rare Genetic Disorder


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'Miracle' Boy Fights Rare Genetic Disorder

Everyday Hero

By Associated Press

April 6, 2005, 12:27 PM EDT

FAIRVIEW, Ala. -- Doctors didn't give Clanton Crumbley much chance of surviving. One suggested an abortion when a serious problem with the fetus was detected. Others suggested his parents leave the newborn baby at the hospital until he passed away.

Kim and Phillip Crumbley weren't ready to give up, and neither was Clanton -- who recently celebrated birthday No. 9.

Kim Crumbley said a test 19 weeks into her pregnancy showed that Clanton had a genetic abnormality so rare it doesn't even have a name. Some of the child's doctors have dubbed it Clanton Syndrome.

Along with hearing and sight and heart and kidney problems, Clanton has severe scoliosis, a curvature of the spine, and is working on improving his speech. He's still a happy-go-lucky kid who loves wrestling with his father and brother and walks down the hall at school high-fiving classmates.

"He loves life," Darrell Hood, his grandfather, told The Cullman Times. "He observes everything we take for granted. He'll walk outdoors and look at the clouds and say, 'Wow!'"

Clanton's resilience might draw the same response.

When his heart and kidney failed and he couldn't see or hear as a baby, doctors didn't expect Clanton to survive the night. They suggested the Crumbleys leave their baby in the hospital to die, but instead they brought him home to Fairview and sought hospice care.

Gradually, they realized Clanton was getting stronger, and eventually he was removed from hospice care.

He still had many obstacles to overcome and has been in and out of the hospital receiving treatments for various ailments.

"We added it up and he's been in the hospital about two years of his life," Kim said.

Phillip Crumbley, a senior vice president at Eva Bank, said the good days far outweigh the bad, however. The youngster tools around in a golf cart while his father or older brother, 10-year-old Spencer, work the pedals, and he loves to wrestle.

Clanton also likes to watch movies.

"He's the only one who can work the television," Hood said.

"And he's the only one who can set the VCR for us," his father said.

Clanton also likes to use the computers in his first-grade class at Fairview Elementary, which he attends with the help of a teacher's aide.

Kim Crumbley, a former school teacher, said at first they had no plans to put Clanton in school.

Doctors warned them that if Clanton caught a cold he might not live through it. Two weeks later, he had spinal meningitis.

"If he could survive that," she said, "he could survive a common cold."

When Clanton started kindergarten, he got around on a small walker or in a wheelchair.

"Now he's running and jumping around, wrestling and doing the cat dance," Phillip said, referring to a dance John Travolta and Uma Thurman made famous in the movie "Pulp Fiction".

Clanton is part of an inclusion program that lets him learn with children his own age, his father said.

"It helps Clanton by being included," he said.

He said other students have responded well to Clanton, who often gives his classmates high fives as they stroll the halls.

Clanton is learning to speak through twice-a-month auditory verbal training sessions at Children's Hospital after communicating with family members using American Sign Language.

"We decided if he was going to be in this county and our church, he was going to have to learn how to speak," his mother said.

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Information from: The Cullman Times

Copyright 2005 Newsday Inc.


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