A 3-year-old got his blood tested bright and early Monday despite the government shutdown.
The persistence of Bo Macan's mother and the compassion of a U.S. senator from Kansas helped get Bo's drawn at Children's Mercy Hospital. Bo's blood is now on its way to the National Institutes of Health.
"What a difference social media makes," said Bo's mother, Carolyn Macan. She said she posted a week ago on Facebook her frustration that her son couldn't get the treatment he needed in advance of a bone marrow transplant because of the government shutdown.
She didn't mince words about her anger at Congress.
After Bo's story went viral and news media outlets picked it up, the office of U.S. Sen. Jerry Moran, a Republican from Kansas, went to bat.
"Sen. Jerry Moran called me personally on Friday and said that he had called some people and pulled some strings," Carolyn Macan recalled.
She was told to take her son to Children's Mercy Monday morning where his blood was drawn thanks to Moran's assistance. She said she is relieved, but also remains cautious.
"I want to make sure it gets there," she said. "I want to make sure they get it and the lab is functioning. I'll be more relieved when NIH calls me and says, 'We got it!'"
Bo needs a bone marrow transplant. Bo has an extremely rare immune system disease and has been quite ill since April. He has spent 100 days at the University of Kansas Hospital this year.
Because of his fragile health, he cannot get the desperately needed transplant until his health stabilizes. Doctors are recommending an experimental drug treatment. To determine the drug dosage, he needed his blood tested.
And he couldn't because of the shutdown.
"Once we know, he can start on the drug," Carolyn Macan said about the testing. "He'll be on it every day for four weeks and then once every six weeks until essentially his disease lays dormant in his body and he can have his transplant."
It will take up to two weeks to get the blood testing completed.
"I am very excited," she said. "As of right now, we wait."
All of his remaining treatments, including his transplant, can be done at Kansas City area hospitals. The testing of his blood for this special drug was all that was needed to be done at a government lab.
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