Skip to comments.'Miracle' Boy Fights Rare Genetic Disorder
Posted on 04/07/2005 6:12:03 AM PDT by NYer
FAIRVIEW, Ala. (AP) - 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.
We live in a sick world.
Sounds like incredible parents.
Just keep this kid away from Judge Greer.
may not be the best life, but its the only one he has, let him live it.
If we try to choose life or death based on the quality of life, we find ourselves on a sliding scale. First it kills folks like Terri, next the unborn, then the recently born, with defects, then the born of poor people. Then those born of certain races and the elderly. And then finally any those the state wishes to get rid of. It is a slippery slope and our nation has stepped out on it.
We miss the commandment to "Be Holy as I am Holy", as God commands. The gift of life is sacred. Our nation needs repentance lest our lampstand be taken away and given to another.
If anyone doubts that God has a purpose for each and every life in this world..... the statement above proves it for me. Working with these kids is an inspiration for those of us who might be a little hard and jaded from living through life's struggles.....making our burdens seem insignificant to those that these kids/parents walk through each and every day. Would I want to live like that? No. But that isn't my purpose. Some of us were born to help others which have those challenges. It all fits into the scheme of things.
If we didn't have the weak among us.... would we have been inspired to find solutions and new cures? Would we have to temper ourselves to practice compassion or selflessness? Those qualities in us would have gone undeveloped, which would be tragic. Terri Shiavo and those that are "less" than perfect......serve to teach us a great lesson...in giving and in love.
We're on the verge of moving well beyond medication or mechanical aid but into the world of stem cells and cloning for therapeutic purposes. Survival by cannibalization.
Do I smell a "Right to Die", "Quality of life" Troll here folks?
Thanks, I looked all over and couldn't find any pictures. The kid looks adorable! I'd love to have him as my son.
No - seems like a sensible point about heroic methods. It is off-thread though.
sniff sniff - phewwww
bottom line, the child is HAPPY to be alive, and happy to have loving parents.
go away deathCrats