Teen's bone marrow procedure as part of clinical trial put on hold during shutdown.

345 75 2 LINKEDIN 38 COMMENTMORE

RENO, Nev. -- Family photos fill a corner inside a family's home like a cheerful time capsule.

But at one point, time appears to stop.

In 2008, Eric Andrew Trowbridge died of complications from a bone marrow transplant. The victim of a rare genetic disorder that required daily blood transfusions, Eric's final photo shows him forever smiling as a happy 15-year-old.

Five years after losing Eric, time came full circle for the Trowbridge family. Earlier this year, tests revealed that younger brother Austin also suffers from the same genetic mutation. Left untreated, Austin's melodysplastic syndrome will eventually lead to bone marrow failure as it did with his brother.

With the disease progressing, the Trowbridges arranged for Austin to receive a bone marrow transplant in November as part of a clinical trial with the National Institutes of Health. That transplant, however, got thrown in limbo after political wrangling on Capitol Hill caused the government to shut down last week.

For George and Marcheta Trowbridge, seeing politicians play a high-stakes version of chicken while sick children wait for treatment is unconscionable.

"It's just a helpless feeling, seeing this whole thing unfold," George Trowbridge said Tuesday. "It's really a soap opera over there. They're handling things like a bunch of little kids who say, 'I'm going to take my ball and go home if you don't do what I want.'"

Playing politics

For a family that already lost one son, seeing politics affect a potential life-and-death situation for another child is especially galling.

"I feel like we're collateral damage," Marcheta Trowbridge said. "I know that the national debt is a huge issue that should not be taken lightly, but in what civilized society do you have kids fighting cancer and contributing to important research treated like this?"

Both parents take exception to what they consider cherry-picking by politicians of what issues to fund while they debate the shutdown.

While segments that are politically popular such as the military quickly get support for funding, programs that support children seem to get short shrift, the Trowbridges said.

The Republican-controlled House approved legislation recently to reopen the nation's parks and the National Institutes of Health, even though Democrats criticized them as part of a piecemeal approach that fell far short of what was needed.

"What right do (Republicans) have to pick and choose what part of government's going to be funded?" U.S. Senate Majority Leader Harry Reid, D-Nev., said recently to CNN reporter Dana Bash, according to a transcript.

The Trowbridges especially found a response by Reid to a Bash question about approving NIH research funding for children with cancer to be insensitive.

"I have 1,100 people at Nellis Air Force Base that are sitting home," Reid said, according to a CNN transcript. "They have a few problems of their own."

Workers for Nellis were allowed to return Monday, although they remain unpaid.

Meanwhile, the NIH remains unfunded, George Trowbridge said.

"I guess kids with cancer aren't as big a voting bloc," Trowbridge said. "This case with kids and cancer research really needs to come out to light. This affects real people."

Reid spokeswoman Kristen Orthman said the senator is a strong supporter of the NIH, and his comments in response to the question about cancer research for children have been misinterpreted.

"Anyone who watched (the CNN) clip can tell that Sen. Reid is rejecting the Republican piecemeal approach to funding the government," Orthman said. "Our goal is to reopen and fund the entire government. No one cares more about kids with cancer getting the treatment they deserve than Sen. Reid."

Speaking for children

In every photo with Eric, younger brother Austin is always the smaller sibling. But at 17, Austin is now two years older than Eric was when he died. Yet Eric remains the big brother for Austin, who remembers their time together like it was yesterday.

"Growing up, we would listen to different kinds of music, swim in the pool and play all sorts of games," Austin said. "I can't pick just one memory about Eric as my fondest memory. The whole time with him was great."

The Galena High School student called the problems surrounding the shutdown counterproductive. At the same time, Austin said he will continue to have a positive outlook and hope for the best.

"Austin is taking things amazingly well — he's certainly taking things much better than I am," George Trowbridge said. "He's a great kid."

Kids, however, don't have much political power, and it's up to the adults to give them a much-needed voice, Marcheta Trowbridge said. It's even worse for children with rare diseases because their conditions do not get the same attention from big pharmaceutical companies, she said.

"There's nobody to speak for these kids," Marcheta Trowbridge said. "We feel strongly that we are in a position to say something about it, and we feel like it needed to be said."

George Trowbridge, meanwhile, thinks it's ironic that his 17-year-old is acting more like an adult than the politicians in Washington, D.C. He echoed his wife's calls for civility in the nation's capital.

"The government is just so dysfunctional, and it isn't working right now," Trowbridge said. "I agree that something needs to be done about the national debt, but they don't need to hold people like us hostage for their debate. There has got to be a more civil way to come up with a solution to the budget and the problems they created."

Contributing: The Associated Press

345 75 2 LINKEDIN 38 COMMENTMORE
Read or Share this story: http://usat.ly/1alYStU