KANSAS CITY, Kan. — The government shutdown means a wait for a three-year-old boy from Roeland Park, Kansas, and his family says his life is in the balance.
Bo Macan has spent more than a hundred days this year in the University of Kansas Hospital.
“We were here all last week because he had a super high fever along with back-to-back seizures which was new,” said Carolyn Macan, Bo’s mother.
Doctors think Bo has a life-threatening immune system disorder that makes him very vulnerable to infection.
“We have a little boy with a very rare disorder that we’re not able to move forward with right now,” said Dr. Mike Lewis of KU Hospital.
A test that must be done of Bo’s antibodies can only be done in a lab at the National Institutes of Health. The government shutdown closed the lab. The NIH told KU Hospital — don’t send Bo’s blood sample.
“Worry is one thing, but to worry about something like this…,” said Carolyn Macan.
Doctors need the test result to tell them whether to start treatment with an IV drug called Rituxan. It could make Bo well enough to get a bone marrow transplant, and that could give him a new, healthy immune system.
Bo’s mother said Congress is irresponsible.
“My kid fights for his life every single day and for them to tell us he can’t have blood work done to further go his treatment is selfish. It’s unfair,” said Carolyn Macan.
Even when the lab re-opens, it will take two weeks to run the test. Bo’s mother said the longer the wait, the sicker Bo could become.
“But we have to wait,” she said.
And they’ll worry about a three-year-old boy who knows nothing of Congress, yet his future is in their hands.
Thursday afternoon, FOX 4’s Meryl Lin McKean contacted the offices of Congressman Kevin Yoder and Senators Pat Roberts and Jerry Moran. A spokesperson told us Senator Moran is aware of the situation and is working to see if there’s anything he can do to help.
