Children lobby for MUSC on Capitol Hill List includes sickle cell, new hospital for kids

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The Medical University of South Carolina sent two kids up to Capitol Hill last month for some heavy lifting with federal lawmakers.

Turner Hill, 12, and Zion Thomas, 14, represented MUSC leaders as they raised awareness about sickle cell disease and the new $350 million children’s hospital among South Carolina’s congressional delegation.

“This was my first trip to D.C.,” said Turner, a rising seventh grader at University School of the Lowcountry.

Turner is a lifelong patient at MUSC Children’s Hospital. He was born nine weeks prematurely and needed a kidney transplant before he turned 3 years old.

Turner spoke to several congressmen about the hospital’s plans to build a new facility on the corner of Calhoun Street and Courtenay Drive by 2019. The project is expected to cost $350 million, the majority of which will be financed by the federal government through U.S. Department of Housing and Urban Development loans.

“It’s important because the old hospital is around 30 years old,” Turner said.

But his trip to Washington wasn’t all business.

“We got to go on a very special tour with (Rep.) Tom Rice, (R-S.C.),” he said. “He took us through the Capitol by himself on our own tour and he took us up on the Speaker’s porch and down on the House floor.”

Zion, a rising freshman at Summerville High School, suffers from sickle cell disease, a genetic blood disorder.

He had been invited by Sen. Tim Scott, R-S.C., to kick off Sickle Cell Day in Washington, but the event was postponed following the mass shooting at Emanuel AME Church in Charleston.

Lawmakers from across the country offered their condolences to Zion once they found out he lived in the Lowcountry.

Later that week he attended a picnic at the White House and shook hands with President Barack Obama.

“He said I was well dressed. I was a handsome young boy and that was pretty much it,” Zion said. “Most of my friends are like, ‘Dude, you’re famous!’ ”

Pat Votava, a federal advocate for the MUSC Children’s Hospital, spends a lot of time with politicians herself, but said children like Turner and Zion have a way with lawmakers that adults can’t copy.

“They’re articulate and they’re sincere and they know what a difference good health care for children can make,” Votava said.

And the legislators look forward to hearing their stories, she said.

“When they see me without a child, they look disappointed. They do — always,” Votava said. “Congressman (Trey) Gowdy (R-S.C.) and Congressman (Jeff) Duncan (R-S.C.) always say, ‘Where’s the kids?’ ”

Reach Lauren Sausser at 937-5598.