Senator works to get boy treatments delayed by shutdown - Cincinnati News, FOX19-WXIX TV

Senator works to get boy lifesaving treatments delayed by shutdown

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ROELAND PARK, KS (KCTV) -

Senate Majority Leader Harry Reid scoffed at a question about the government shutdown affecting sick children, but one Kansas City area mom says Congress is putting her son's health at risk.

"They don't care that my son is sick and could die because they're selfish and can't agree," Carolyn Macan told KCTV5.

Her 3-year-old son, 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.

The family and doctors are working to stabilize his raging fever so he can get a bone marrow transplant.

The specialists at the National Institutes of Health have been working to identify a course of action. They wanted to analyze Bo's blood and expected to start needed drug treatments this week.

"Monday morning, we were suppose to send 10 millimeters of blood to NIH and the doctors came in and said, 'We can't send the blood.' So I said, 'When can we send the blood?' And they said, 'We don't know,'" Macan said.

Some pundits believe the government shutdown could continue until mid-October when the debt ceiling deadline arrives, which could send the United States into default.

After Macan's comments went national, area members of Congress have worked to get the blood work done.

Macan said she was thrilled but remains somewhat skeptical that the situation will get resolved while the government is closed.

U.S. Sen. Jerry Moran, a Republican from Kansas, is working to get the blood drawn at Children's Mercy Hospital in Kansas City. This would be done Monday morning.

The blood would be shipped to the National Institutes of Health for the testing, which will determine whether Bo can get the experimental drug and at what dosage level.

She said she normally doesn't follow politics, and just wants the situation resolved. She didn't have an inkling that a government shutdown could impact her son until this weekend.

"I promise you if those congressmen had a sick kid, they would get their blood work done," she said. "I don't have those funds or means."

Earlier:

House Republicans are insisting that any budget deal include a delay in the implementation of key parts of the Affordable Care Act, also known as Obamacare. President Barack Obama and Senate Democrats, led by Reid, say they won't negotiate on something that has been found constitutional by the Supreme Court and Republicans have repeatedly failed to overturn. The GOP presidential nominee, Mitt Romney, made overturning Obamacare a key part of his campaign, and Obama argues that his re-election shows voters have spoken on the issue.

Democrats argue that if House Speaker John Boehner, a Republican, would bring a clean budget bill up for a vote that enough moderate Republicans would join Democrats to pass the bill, and that tea party members are holding the Republican Party hostage.

As anger from the public grows at both sides, House Republicans have now sought to fund certain portions of the government, but Reid thus far has refused to entertain this idea.

On Wednesday, Reid said that Republicans shouldn't be able to "pick and choose" what parts of the government should be funded, including the NIH. He said Republicans are obsessed with Obamacare, but the law is working.

CNN reporter Dana Bash followed up by asking Reid about helping sick children who cannot get treatment from the NIH because of the shutdown.

"But if you can help one child who has cancer, why wouldn't you do it?" Bash asked.

"Why would we want to do that?" Reid replied. "I have 1,100 people at Nellis Air Force Base that are sitting home. They have a few problems of their own. To have someone of your intelligence to suggest such a thing maybe means you're irresponsible and reckless."

Macan said she is frustrated that Congress' failure is delaying needed treatments.

"It's ridiculous," she said.

The situation sickens and infuriates Bo's mother.

"They suck. I think they're selfish and they should think of somebody else other than themselves," she said. "For once, it's not about them."

The Macans are staying in the Kansas City area until Congress reaches a compromise and the NIH can reopen to allow speciality treatments.

"We all know the government won't fork my bill to stay any extra day while they vacation!" she said.

In the meantime, she is hoping her son is OK. She said he is one of just a handful people to have his condition, and the treatment has never been done on a child.

"We take it day by day," she said.

Note: Bo does NOT need a blood transfusion.

KCTV5's Liz Manninger contributed to this report.

Copyright 2013 KCTV (Meredith Corp.) All rights reserved.

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