Over the next few columns, I’m featuring people who have joined my Facebook page “Disabilities by Daniel J. Vance.” The first is Dan Lane of Vinton, Iowa.
“When my son (Ryan) was born seven years ago, his head leaned toward his shoulder,” said 40-year-old Lane in a telephone interview. “Doctors didn’t know what was wrong. We went home from the hospital after two weeks. They told us to do a lot of massaging so his (neck) muscles could grow enough for him to support his head.”
Two months later, nothing had changed and Ryan was experiencing other medical issues. Lane said he and his wife practically “lived” in various hospitals for a year seeking a diagnosis. Finally, physicians diagnosed Klippel Feil Syndrome, which a National Institutes of Health website defines as a “rare disorder characterized by the congenital fusion of any two of the seven cervical (neck) vertebrae.”
Common signs include having a short neck, restricted upper spine mobility, and low hairline at the back of the head. It is associated with other abnormalities, from scoliosis to rib anomalies.
“And people with it also have organ problems,” he said. “Some organs grow slower and others don’t grow at all. My son doesn’t have a single vertebra in his back that’s correct.” Early on, doctors told the Lanes to enjoy each week because they weren’t sure Ryan would live. It was “heart-stopping stuff” as a parent.
It’s a miracle Ryan lives. Fortunately, his physician at Minneapolis Shriners Hospital is one of two U.S. doctors considered an expert in Ryan’s condition. Only about 50 Americans with it have survived into adolescence. Ryan is in second grade.
But what is he like as a person? “Ryan can walk up and just light up a room and people’s spirits,” said Lane. “I’ve never seen anyone who can do it like him. He’s more than willing to give someone a hug if they’re crying. He loves interacting with people.” In fact, this year Ryan was named “King” of the Iowa (High School) Shrine Bowl in front of 15,000 fans chanting his name.
Lane, a social worker, advised parents in similar situations to appreciate their child’s strengths and abilities, not dwell on negatives, and keep pounding on doors for answers. He added, “It comes down to looking at the ability rather than the disability.”