More tests needed for boy with mysterious disorder

Photo courtesy University of Kansas Hospital.

It is not yet time for a bone marrow transplant for a 4-year-old boy at University of Kansas Hospital with an unknown and threatening immune system disorder.

Bo Macan, whose critical blood test was delayed by the government shutdown, got the test this month and it shows he does not have what doctors suspected.

More testing by the National Institutes of Health will be needed before any action, university hospital doctors said at a Wednesday press conference.

The hospital’s Dr. Michael Lewis, Bo Macan’s mother Carolyn Macan and Dr. Selena Gierer at a press conference yesterday.

“Now we’re kind of starting over with his immune system, trying to figure out if there is an even more rare condition he has,” said Dr. Selena Gierer. “The best case scenario is we find something that can be treated with a bone marrow transplant.”

Bo has long suffered from an immune system disorder that leaves him prone to life-threatening infections. He was at the hospital Wednesday following surgery to remove a medical port in his chest that doctors feared could lead to infection.

“It was kind of like an open gateway in his body for infection to go,” said Dr. Michael Lewis, medical director of the hospital pediatric unit.

Bo’s mother, Carolyn Macan, said the family will continue pushing for the answer.

“I can’t get frustrated now, I can’t stop now,” she said. “We’re so close, for us to go to NIH, that’s what we’re going to do.”

She is continuing to participate in a Friday drive for bone marrow donors to be held at Shawnee Mission North High School from 5:30 to 8 p.m.

“There are so many people it can help,” she said. People from ages 18 to 44 can take five minutes for a DNA cheek swab and learn if they can change someone’s life, she said.

There may not be any immediate help for Bo, who has suffered severe medical problems since he was 8 months old, but the boy will not give up, his mother said.

“You have to love him because he’s very grouchy,” she said. “He’s a fighter.”

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