Boy’s Disorder Leaves Bones Fragile as China
The puzzle for a stranger meeting Basil Rhodes Jr. is what to look at--and what to see.
Look at him, and there are these facts:
Basil is 13, yet he measures more like an infant. He is 32 inches long and weighs 22 pounds.
Look at him some more. A genetic mistake stopped his growth when he had barely started and left every one of his bones as fragile as china.
Basil’s brittle bones can snap like a twig under the gentle pressure of a sneeze, or a cough, or his mother’s caress.
His baby-like arms are gnarled by uncountable fractures. He can’t lie on his belly because the pressure from his few pounds will crack his ribs. His condition is incurable, and the broken bones are largely untreatable.
If you just look at Basil, though, and don’t see him--see, in the sense of understand--here’s what you miss:
- A curious teen-ager who reads two years ahead of his seventh-grade level, who beat his home computer at chess, who avidly follows college basketball and the New York Mets.
- A rabid fan of professional wrestling who stays awake into the wee hours to watch the likes of Hulk Hogan accept with mock courage yet another challenge to fight right here, Saturday night, with no rules.
- A youth possessing the courage, imagination and sheer willfulness to nurture improbable, and impossible, dreams. Every night, against all the rules.
The splintered bones of Basil Rhodes Jr. disfigure his tiny body but perhaps give sturdier frame to his character.
He lives with a condition the doctors call osteogenesis imperfecta. The rare genetic disorder occurs in about one birth in 20,000.
Dr. Joe C. Christian, chairman of medical genetics at Indiana University School of Medicine in Indianapolis, says Basil’s genetic blueprints don’t include plans for making a protein glue called collagen. Collagens bind bones, tendons and other connective tissues, literally holding a person together and allowing growth.
The condition has nine recognized variations, Christian says. Some cases are relatively mild. The lucky ones may lead fairly normal lives. They hold down jobs, bear children. In lethal cases, the afflicted fetus disintegrates in the womb.
Basil “has the worst you can have,” says his mother, Dorothy Rhodes.
The 30 or so bones that doctors broke during Basil’s arduous breech birth were not his first fractures. “He had broken bones before he was ever born that had healed,” Rhodes says.
Constant pain tormented the infant Basil. He cried almost continuously, night and day, for the first two years of his life. Rhodes and her husband, Basil, did their best to comfort him.
“We’d carry him on a feather pillow, rock him, ease him back to bed,” she said. “But as soon as we put him down, he’d start crying again.”
Lifting their son required carefully scooping a hand under his backside, cradling his head in the palm while a forearm supported the length of his body. Basil’s grandmother was afraid even to try and so did not hold her grandson.
The breaking has never stopped, but Christian says the condition improves sometimes after adolescence.
Rhodes believes more bones broke recently as she lifted Basil. “When I picked him up, I could hear the bones popping in the back of his head.”
The Rhodeses left their native West Virginia to settle here and raise their family. Basil Rhodes, 41, is a carpenter. He and his wife have a daughter, Priscilla, 16, who is healthy.
Basil attends classes occasionally at Bluffton-Harrison middle school, where he lies in a stroller, on his back, between the rows of his classmates. Most of his instruction, though, comes at home. A school tutor spends five hours each week teaching Basil the basics.