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Teen liver-transplant survivor strives to be like other kids By David Campbell , Staff Writer of The Princeton Packet August 22, 2003
Hereditary disease almost took her life six years ago.
Courtney, who lives on Juniper Row in Princeton Community Village, was diagnosed with the Alpha-1 antitrypsin deficiency when she was 13 months old. The genetic condition prevents production of a protein that neutralizes a digestive enzyme manufactured by the pancreas. It usually results in the breakdown of the liver, and if the liver is not replaced by a donor organ, it can lead to death. The disease can lie dormant and then return at any time, and if it doesn't attack the liver when the person born with it is young, it will attack the lungs at middle age, said Courtney's adoptive mother, Jo Ellen Jefferson. Courtney's birth-sister Colby also carries the disease while her birth-sister Camron does not, said Ms. Jefferson, who is mother to all three siblings. "We knew Courtney had this disease and we were already on guard for it," Ms. Jefferson said. "The doctors said her liver could go bad at any time." Courtney's liver did fail, and when she was 9 years old, she had a transplant operation that saved her life. "It was very terrifying," her mother said. "She went from bad to worse in 18 months. Her liver started failing. It was just before they were ready to put her in the hospital to maintain her health that we got the call she had one — they had a liver to give her — it was bittersweet because, you know, someone else's child had to die for my child to live." At the time of the surgery, The Arts Council of Princeton held a Gospel Jubilee Benefit for Courtney which raised more than $10,000 toward a van to help Ms. Jefferson and her daughter make the necessary trips for checkups and long stays at St. Christopher's Hospital for Children in Philadelphia. Today, Ms. Jefferson continued, Courtney is a typical teenager, noting, "She's something else." She has no physical restrictions, her mother said, but she still makes regular visits to Alfred I. du Pont Hospital for Children in Wilmington, Del. for checkups. And she will be on medication such as steroids and antibiotics indefinitely, because there's always the risk that her body will reject the new liver. "She'll have to deal with this for the rest of her life," Ms. Jefferson said. Recently, in complications related to her condition, Courtney has had three stays in the hospital, two bouts of pneumonia and has had her appendix removed. About six weeks ago she had a rejection reaction, Ms. Jefferson said, which was brought about because Courtney, out of a desire to be like other kids, decided to stop taking her medication. "She decided she was doing so good that she didn't need her medicine," her mother said. "She wanted to be like everybody else, medicine-free. It scared her. She will never do that again." Courtney said she decided to stop taking her anti-rejection medication because she was stressed and depressed, but said she's doing well now and notes that sometimes her condition can be frightening. "You never know when it's going to reject," the teen said. "You think you're doing well, but you've been rejecting for a couple of months. It can reject by you not taking your medicine." But keeping on top of her medication brings its own risks. "The medicine lowers your immune system," Courtney continued. "I can catch anything from anyone. Pneumonia, anything. When I am sick, I can't go out or anything, I have to stay in and rest." But Courtney doesn't let her condition hold her back or slow her down. In school, she founded her own club, called We Care Club, which conducts fund-raisers, bake sales and food drives for those in need. "I wanted to start something unique and different from the other clubs," she said. In addition, she dances with a praise-dance troupe at her congregation at First Baptist Church, sings in the choir and participates in several other church activities as well, she said. When she graduates from high school, Courtney continued, she said she'd like to become an actress, and said she plans to study multiculturalism in college. When asked how she feels about having to live with her liver condition for the rest of her life, she's optimistic. "I don't like that I have it, but I'm thankful that I'm alive at least," Courtney said.
Source: Wojciechowski, Frank. "Courtney's photo", The Princeton Packet 22 Aug 2003, http://www.zwire.com/local/Z/ZWIRE1091/zwire/images/ZPPG-COURTNEY821497.jpg |
Courtney
Jefferson, who turned 15 this month and will be a sophomore at Princeton
High School this fall, was born with a rare hereditary disease that
almost took her life when she was nine.