ROELAND PARK, Kan. -- Two years ago, we told you about a metro boy who needed a test done at the National Institutes of Health, but couldn’t get it done because of a government shutdown. FOX 4 helped Bo Macan get that test. But two years later, it’s still unclear why Bo has so many medical problems.
Bo takes more than a nap after his kindergarten class. He spends many hours resting. Going to kindergarten at all is a triumph for a boy who’s spent almost half of his life in the hospital.
“He gets to be a six-year-old little boy. He gets to be normal,” said his mother, Carolyn Macan.
That’s in spite of being the rarest of medical cases. When we met the Roeland Park boy two years ago, doctors were baffled. Why did he have so many medical problems including a weak immune system, epilepsy and type one diabetes? Now, he has rheumatoid arthritis, too. Bo’s had countless tests at the National Institutes of Health.
“They're still not sure what exactly it is and so he's had some of the best minds in the world who can't quite figure him out,” said Dr. Mike Lewis, Bo’s pediatrician at the University of Kansas Hospital.
Bo’s mother added, “Whatever he has is so rare that they're just calling it Bo's Syndrome because they've never seen it before.”
The community has supported Bo in many ways including a bone marrow drive back when his doctors thought a transplant might be the answer.
“Will it help it? They don't know. Is it worth the risk? I don't think so,” said Carolyn Macan.
This month, Bo or “Super Bo” as he’s known to many, is featured on Go Shout Love http://www.goshoutlove.com , a social media campaign.
“We feature families that have a rare disease. You don't get rarer than Bo,” said Jessica Santo of Go Shout Love.
Bo’s mother is hopeful that there will eventually be answers for him.
“Somewhere, they’ll figure it out,” she said.
Dr. Lewis said, “I know that person’s out there.”
They’re looking for someone to provide those elusive answers that could give Bo a better life.
Dr. Lewis says Bo’s big challenge now is avoiding other kids’ germs at school. A common cold can easily turn into pneumonia, but his mom says it’s worth the risk for him to be in school.