Young Patient With Condition So Rare It’s Named After Him

Media Resources

Jill Chadwick

News Director

Office: (913) 588-5013

Cell: (913) 223-3974


Six year old Bo Macan looks like a typical little boy. Yet he’s anything but typical, having spent almost half his life in the hospital. Bo has many medical problems including a weak immune system, epilepsy, hearing problems and type one diabetes. Now, he has rheumatoid arthritis, too. Bo’s had countless tests at the National Institutes of Health. The syndrome is named after Bo … because his combination of medical issues has not been documented anywhere in the world and there is no known cause or cure.

“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. Dr. Lewis says Bo’s big challenge now is avoiding other kids’ germs at school. A common cold can easily turn into pneumonia. This month, Bo or “Super Bo” as he’s known to many, is featured on Go Shout Love, a social media campaign featuring families that have a rare disease. “Bo’s Syndrome is chronic and so are the medical bills,” Carolyn Macan, Bo’s mom explained. “He’s on seventeen different medications and relies on expensive medical equipment to stay alive.”