Summerville teen talks sickle cell disease with CongressTweet
By Lauren Sausser
The Post and Courier
Summerville’s Zion Thomas, 13, center, met with South Carolina Reps. Joe Wilson, from left, Trey Gowdy, Florida Sen. Marco Rubio, Sen. Tim Scott and Rep. Tom Rice during his June visit to Capitol Hill. photo provided
When a Washington, D.C., TV reporter asked Zion Thomas what he was up to on Capitol Hill last month, the Summerville teenager couldn't help making a joke of it.
"I was shaking hands and kissing babies," he said.
Just like a real politician, his answer was at least half true. Zion did shake a lot of hands — a lot of powerful hands.
The 13–year–old and his parents flew to Washington in June for the annual Children's Hospital Association's Family Advocacy Day to talk to lawmakers about sickle cell disease — a genetic blood disorder that Zion was born with. The disease distorts his body's red blood cells into an "S" or a sickle shape, causing the misshapen cells to block blood flow. His symptoms, which include chronic pain and internal organ damage, have kept him in and out of hospitals since he was 6 months old.
"My mom came up to me and asked, 'Do you want to be an advocate for sickle cell?' So I was like, 'What does that mean?' And she said, 'Well, you will talk about sickle cell, how it is, how it affects you.' So I was like, 'OK. I'll do it.'"
Experts believe that one in 500 African-Americans suffer from sickle cell disease.
"It's hard for me because I can't be a normal kid like other kids," Zion said. "I have to drink more water than kids. I can't play sports — football, wrestling. I just have to take more care of myself."
Pat Votava, director of government relations for the Medical University of South Carolina Children's Hospital, said she chose Zion to represent MUSC in Washington partly for his poise and first-hand experience with the disease, and partly for his sense of humor. He's more engaging than your average teen.
"When I first met him he told me that he had just moved to Charleston in the last year from Northern Virginia," Votava said. "He told me that he had gone around door to door introducing himself to the neighbors and asking if they had children he could play with. His mom told me one of their neighbors had nicknamed him 'The Mayor.'"
"After meeting him and hearing that story, I knew he'd do great representing MUSC Children's Hospital on Capitol Hill," Votava said.
Zion spent time with several congressmen during the trip, including Rep. Tom Rice and Sen. Tim Scott. "He has his burdens and he maintains that wonderful engaging, positive outlook," said Rice, R–S.C. "He's a fine young man."
The congressional sickle cell caucus is recruiting well–known sickle cell patients as national spokesmen and spokeswomen for a campaign to raise awareness about the disease. Rice is a member of the bipartisan group and Scott, R–S.C., is its co–chairman.
Scott said he believes drawing attention to the problem will help generate private funds necessary to eventually find a cure.
Meanwhile, Zion anticipates he'll have a lot to share with his friends about his summer break when he returns to Dubose Middle School this fall, including how he had the chance to help congressmen cast votes on the floor of the House of Representatives.
"They were just saying, 'Nay for this. Yes for that.' ... Nay! Nay! Nay! Nay! Yes! Yes! Yes!," he said. "I was like 'Ah! So many votes!'"
Zion may be a politician in the making, Scott predicted. "A young man who is known as 'The Mayor' may one day end up as the president."
Editor’s note: The article ran July 20 in The Post and Courier and is reprinted with permission.
July 24, 2014