A young lawyer in Washington, D.C. wasn’t thinking of death. But it was stepping closer anyway.

Nefeterius McPherson would sleep 12 hours and feel like she had woken from a marathon. The years after her diagnosis with a rare bile duct disease were dwindling to weeks and the days hung heavy.

While McPherson’s body was aching, Taitlyn Shae Hughes awoke with a headache.

Taitlyn rose at 5:15 a.m. to get ready for middle school in Martinsburg, W.Va. The pain caused her to cry, something she rarely did, and she told her mom that her head hurt. While her mom filled a bathtub with hot water to ease her pain, Taitlyn went back to sleep.

She didn’t wake up.

Within two days, a brain hemorrhage claimed her life at 12 years of age.

On Nov. 6, 2011, Hughes and McPherson were within miles of each other in the nation’s capital. One woman was hanging on to life while a child’s parents faced each other.

As a healthy child Hughes had told her parents that she wanted her organs to be donated should the unthinkable happen. They told this to the doctors.

And Nefeterius was saved.

Journey to West Virginia

It’s been almost a year since Taitlyn’s passing and Nefeterius’ transplant. Three days before the anniversary, Nefeterius, 38, is visiting her donor’s home state. West Virginia University has invited her and Taitlyn’s family to take in the Texas Christian University football game on Nov. 3 at Mountaineer Field in celebration of the compassionate child who saved Nefeterius’ life.

McPherson, who has since returned to her native Killeen, Texas, will be visiting her newest friends of the Mountaineer nation who have eagerly responded to the story of herself and Taitlyn, who was an avid WVU fan.

As Nefeterius continued to heal after the transplant, she told their story on Facebook, on Twitter and to whatever media outlets would listen, something that was natural to her as the former spokeswoman for the U.S. Trade Representative. Her message was delivered to West Virginia through a tweet that told the world she was in the stands at the Texas vs. WVU game in Austin this season wearing Taitlyn’s “True Gold and Blue” T-shirt.

She wrote:

@WestVirginiaU I’m from TX but my organ donor was from WV. I wore her WVU shirt 2 the game on Sat. I’m now a #WVU fan.

Within days, her tribute page on Facebook had thousands of additional likes. The tweet was shared nearly 500 times. The New York Daily News, The Huffington Post, The Associated Press and newspapers across West Virginia and the nation responded with stories about Nefeterius and Taitlyn.

When Nefeterius announced days later that she would “retire” Taitlyn’s T-shirt, people across West Virginia asked for her address to send her WVU gear. They offered up their season tickets. They wrote on message boards to get her to a WVU game.

Ten days after the Texas game, she got her first box from West Virginia that contained a Flying WV hat, T-shirt, picture frame and photo of Taitlyn and bumper sticker along with a copy of The Daily Athenaeum student newspaper issue that carried their story.

“I’m shocked at the level of generosity, the level of kindness,” Nefeterius said. “It is one thing to say you’re part of the Mountaineer family. And it is a completely different thing to make me feel like I am and to embrace me like I either grew up in West Virginia or I went to school there.”

The essence of the message from West Virginians and Mountaineers is in this post from Joyce Shamblin Johnson on Nefeterius’ tribute page: “It’s the WV way. We care about our own. You have part of us now, and we can tell you’re not going to take that for granted.”

During her visit, which is being supported by private donations, Nefeterius will meet with faculty and students from WVU’s Perley Isaac Reed School of Journalism to discuss how she is bringing awareness to organ donation. It’s a topic that many in the school are keenly aware of as journalism professor Joel Beeson and his wife and fellow journalism professor Dana Coester have waited four years while he’s been on a liver transplant list due to complications from a genetic bleeding disorder. This month, Beeson is scheduled for a liver transplant from a living donor, another way of donating certain organs.

Beeson is one of more than 116,000 on the national transplant waiting list, according to statistics from the Center for Organ Recovery & Education. Of those thousands, 17 will die each day without a transplant, said Nicole Cornell, the center’s northern West Virginia liaison.

While some in West Virginia have posted on Facebook that they are now organ donors because of Taitlyn’s gift to Nefeterius, the state has a low percentage of residents opting to donate their organs. When asked about the topic, 85 percent of Americans support organ donation, Cornell said. In West Virginia, 34 percent of those with driver’s licenses have designated themselves as organ and tissue donors.

Cornell said the largest obstacle to donation is misconceptions. Some fear not being able to have an open-casket funeral for their loved ones. Others are concerned about paying for the procedure. But organ donation is done at no cost to the donor’s family, and it’s so non-invasive now that mourners wouldn’t notice the difference.

Nefeterius said there’s another fear she hears often, which is that the medical establishment will not work as hard to save a patient if it’s known that the person is an organ donor. She says that’s just not true and that grieving families aren’t contacted until all lifesaving measures are completed.

Taitlyn’s gift was not just to Nefeterius. Three others received organs that day. And organ donors can often save up to eight lives.

Shared lives

Nefeterius has gained another family through her liver transplant.

When Nefeterius is ill from infections slipping past her lowered immune system, Taitlyn’s mom, Nicole Siva, asked Facebook friends for prayers on her behalf and calls to check up on her. Nefeterius tried to make it to Taitlyn’s sister Darian’s dance recital in Elkins, but she was not well enough to make the trip. On Nefeterius’ first trip to West Virginia, Taitlyn’s family gave her the T-shirt she later wore to the Texas game.

Nefeterius is grateful for her life. Yet she’s alive because a child is not. Their story includes the bitter and the sweet. She often thinks of Taitlyn and believes honoring her is the right thing to do.

“She was 12, you know? I still struggle with that at times,” Nefeterius said. “She will never live to experience the things we take for granted: your first car, becoming a teenager, going to college, getting married, having children. At that age, I remember I just felt l was going to live forever.”

Now, the state and nation are aware of how a little girl’s foresight and compassion created a priceless gift. Nefeterius calls her new organ “Taitlyn’s liver,” which as time goes on is becoming more and more a part of her. And so is West Virginia.

“How did wearing one shirt give me so much Mountaineer pride?” Nefeterius asks. “I can’t even tell you where that comes from.

“It must be the liver inside of me.”

For more information on organ donation, visit http://donatelife.wv.gov or http://donatelife.net

By Diana Mazzella
University Relations/News

-WVU-

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