"I can't get frustrated now. We've come too far," says Carolyn Macan, mother of four-year-old Bo Macan, who continues to fight for his life.
Macan has a severe immune deficiency condition that even doctors can't pin down.
"There's not an activation downstream in parts of his immune system that helps him fight infections," said Dr. Mike Lewis, Director of the Pediatric Unit at the University of Kansas Medical Center.
Bo's infections can get so bad he's been in and out of hospitals his whole life, and relies on tubes and a number of devices just to stay alive.
But if you saw him out and about, you'd think he's every bit a typical little kid.
He loves playing in the autumn leaves; he loves playing in the snow.
And he loves being around his family.
But now he's bedridden at KU Medical Center, and his fight continues.
"Every once in awhile you come across something that you just can't figure out," said Selina Gierer, immunologist and allergist at KU Med. "He's been evaluated in Cincinnati, he's been evaluated in Boston. We're moving up the ladder. We're going to the NIH."
The NIH is the National Institutes of Health, and Bo made headlines when Kansas Senator Jerry Moran got Bo some blood tests despite the NIH being closed during the government shutdown.
"They have the most specialized physicians there who may take care of only one disease process their whole life," Gierer explains. "They are the experts on that. They have done the extensive research on these genetic disorders."
At the hospital he's known as "Super Bo" - kid, who despite his small frame, has been known for his high spirits and his fight to stay alive.
And his parents are hoping new experts can give them insight on what's wrong with him, and what could potentially give him the normal life he deserves.
At this weekend's high school football game at Shawnee Mission North, there will be a bone marrow drive for Bo.
Participants are asked to get a simple swab of the inside of their mouth to test for a match.
A bone marrow match could be the first step in stem cell treatments for Bo's disease.
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