ROELAND PARK, Kan. -- Six months ago, we told you about a Roeland Park boy who needed his blood tested by the National Institutes of Health. The government shutdown delayed it. Now Bo Macan's family thinks they're finally getting closer to answers that could save Bo's life.
The four-year-old has been sick his whole life. He lacks an immune system to fight off infection.
"Just an upper respiratory infection for him could be fatal so we have to be really careful," said his mother, Carolyn Macan.
They have to be careful that his twin sister, Brooklyn, and other loved ones don't spread germs to him. He's on many medicines.
"These are all antibiotics," said Macan as she points to five bottles on a counter.
They're lifesavers, but they've damaged Bo's hearing so he now wears hearing aids.
His family is wanting and needing to know exactly what disorder Bo has. The answer will tell them whether Bo should get a marrow transplant to possible cure it.
Last October, his doctors at the University of Kansas Hospital thought they'd get an answer from a blood test done by the National Institute of Health. When testing was delayed by the government shutdown, FOX 4 contacted Senator Jerry Moran who arranged for it to be done. The test showed Bo doesn't have the rare immune system problem that the doctors suspected. The Macans then sent his medical records to NIH.
"The doctor at NIH spent a solid two months going through everything which is exciting, I think, because he took the time to do it," said Bo's mother.
Now the doctor and others at NIH need to see Bo for exams and more testing. The Macans are scheduled to go to Bethesda, Maryland, later this month.
"The unknown stresses me out a little bit, but the part that we're finally here is like a weight off my shoulder," said Macan.
Finally, answers could be in sight. FOX 4 will let you know what the Macans find out.
Bo's mother says support from his caregivers, friends and even strangers has been unbelievable. Marrow drives held in Bo's honor added about 300 people to the national marrow registry.