They called him Big James, and when he was tracking down varsity quarterbacks as a high school underclassman in the state championships, he was a special sight to see – especially to those who knew The Story.
The story that Big James was born with a right foot so disfigured his mere presence on the football field was something only a fellow Shriners Hospital patient could comprehend. The story that Big James had a condition that had kept him from speaking until he was 4 years old. The story that Big James suffered from seizures so severe and a doctor thought he would be so limited by autism that he recommended to Big James’ mom to give him away, lest he bankrupt the family.
The story that, all these years later, while Big James was pursuing those frightened quarterbacks, it was only adrenaline that masked the intense pain in his left foot – his “good” foot – and that he was desperate for someone, anyone, to figure out what was wrong.
That desperation is what led Big James and his mom, Shannan, back to Shriners Hospitals for Children — St. Louis late last year, to the doctor who had changed his life as an infant, in the hope that the same doctor could help him again.
‘Like you pulled into heaven’
Big James is now 19, stands 6-foot-4 and tips the scales at 280 pounds, a good football weight but one he is working hard to lessen as he transitions into the next phase of his life. But back then he was born amidst chaos, more than three weeks premature to a mom who almost died giving birth. It was only moments after his first breath that doctors noticed the severe angle at which his left foot was bent.
It was clubfoot. No clubfoot is good, but this one was particularly bad. For the first six months of his life, doctors tried various procedures to fix it, but the foot remained turned sideways. When the physician told Shannan, “Perfect is the enemy of good. This is as good as it will get,” she wasn’t happy.
So Shannan returned home to Goodland, Kansas, with her baby boy and prayed. And then she prayed again. And again. Three times a day, she would pray for something to happen that would help her first child. Shortly after, something did happen.
“Our neighbor across the street had told a friend, who told a friend, who told a friend who was a Shriner, about James,” Shannan said. “The Shriners came to our front door and asked if they could sponsor James.”
Back then, would-be St. Louis Shriners Hospital patients had to have Shriner sponsorship, a practice discontinued early this century. With that support, Shannan and James made the 14-hour road trip to Missouri to see Perry Schoenecker, M.D.
“When we pulled into that parking lot, it was just like you pulled into heaven,” Shannan said. “I don’t know how to explain it. It was just an energy. You just felt better.”
The St. Louis Shriners Hospital was her heaven, and Dr. Schoenecker was, to Shannan, someone you’d expect to meet there. “He was phenomenal,” she said of her first meeting with the physician. “He must have wings under his lab coat because he’s an angel.”
To Dr. Schoenecker, now more than four decades into a stellar career, perfect was not the enemy of good; it was what he and the St. Louis Shriners Hospital team were going to pursue with James’s foot. And so they did. Shannan and James made the 28-hour round trip every other week – five days home, then five days on the road.
“We went through three cars,” Shannan said. “I would have gone through 30 with the level of care James was receiving.”
‘An unreal world’
Thanks to the expertise of Dr. Schoenecker and the St. Louis Shriners Hospital team, James began to walk when he was around 17 months old. He battled through his other medical problems that eventually were brought under control. He grew into Big James, the active kid, the budding football player with The Story.
But his St. Louis Shriners Hospital journey wasn’t over. As he began his teen years, he started feeling pain in his left foot. Doctors attributed it to growing pains because, after all, James was growing fast. But James said he knew it wasn’t growing pains, knew that it wasn’t a soft-tissue injury caused by football.
So the family, which had relocated to the Eastern Shore of Maryland by then, began a new medical journey, trying to find answers as the pain intensified. Finally, after dozens of appointments at different medical facilities on the East Coast, James had had enough. He told his mom he wanted to come back to St. Louis, back to Dr. Schoenecker.
James and Shannan spent the New Year this year at the St. Louis Shriners Hospital. Dr. Schoenecker essentially rebuilt James’s left foot on New Year’s Eve. As midnight neared, James experienced another slice of the St. Louis Shriners Hospital difference.
“They got Papa John’s for us for New Year’s. Whose hospital does that, gets you a whole pizza for yourself?” James said. His was pepperoni and sausage.
James faces a long road to recovery and an uncertain future. Because of the time he spent chasing a fix for his left foot, his once-bad right foot is ailing him again. He said he fully expects Dr. Schoenecker to have to operate in the future, a sentiment the doctor says is possible. Shannan knows her son is in the best possible hands.
“How do you talk about someone who totally changed trajectory of a child’s life? He changed everything,” she said. “James never would have been able to know what it was like to have that feeling of fulfillment from sports, to accomplish what he has accomplished on and off the field, without Dr. Schoenecker and Shriners Hospital.”
Added James: “They have given me a life so that I can pursue something on my own and achieve something rather than be a lump on the couch.”
In other words, because of the St. Louis Shriners Hospital, James has the opportunity to write a new story that is far different from the one he has had so far.
Dr. Schoenecker understands how Shannan and James feel about the opportunity they found at the St. Louis Shriners Hospital. “This is kind of an unreal world,” he said. “What we do is not the kind of care you get everywhere. This is a very user-friendly place for families with big problems. I can totally connect with their appreciation for that, and it makes me happy that I’m able to help him.”