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Stormie Jones, first heart-liver transplant patient, dies at 13

Published Oct. 18, 2005

Stormie Jones, the freckle-faced Texas girl who loved scary films and Gothic novels and who was only 6 when she received the world's first simultaneous heart-liver transplant, died Sunday. She was 13. She died at Children's Hospital in Pittsburgh, where she had been flown from her home in the Fort Worth suburb of White Settlement late Saturday after complaining of flu-like symptoms. At the hospital, Stormie deteriorated throughout Sunday morning and died at 9:52 a.m., said Dr. Jorge Reyes, a staff physician.

Her mother, Lois Purcell, was with her.

"She deserved more," said Teresa Millikan, a family friend who spearheaded efforts to raise funds for Stormie's hospital expenses. "She was God's walking angel. She touched so many people's hearts."

An autopsy was performed Sunday, but details were not immediately released.

Reyes said Stormie's blood pressure dropped within hours of her arrival at the hospital. She became lethargic, then suffered a heart attack, he said. Doctors tried for more than an hour to resuscitate her.

"She presented acute respiratory distress and had a cardiac arrest," Reyes said.

"Things happened with incredible speed," said hospital spokeswoman Lynn McMahon. Stormie was alert when she was taken to Children's Hospital, and it had not appeared to be an emergency, she said.

In a widely publicized 16-hour operation on Feb. 14, 1984, Stormie received a heart and liver from a 4-year-old New York girl who had died three days earlier in a traffic accident. The operation was necessary because she was born with a genetic condition that put her cholesterol levels at 10 times normal.

She had inherited one abnormal gene from each of her parents, a one-in-a-million chance, doctors said at the time.

She already had undergone double-bypass surgery for coronary artery disease due to her high cholesterol content, making her own heart too weak to withstand the liver transplant.

Despite the severity of the procedure, within a month she was able to resume a fairly normal life and was even eating an occasional hamburger and hot dog, although the majority of her diet was restricted to vegetables and skim milk.

(Two other heart-liver transplants were performed at the Pittsburgh hospital the following year, but both patients died within a few days of surgery.)

Until her death, Stormie took the experimental anti-rejection drug FK506, which has been approved for testing exclusively at the University of Pittsburgh. A few exceptions have been made for patients elsewhere.

After living a fairly normal life with occasional return trips to Pittsburgh, last February hepatitis damaged Stormie's liver, and she returned again to Children's Hospital for a second transplant. In July she again underwent treatment for hepatitis, but a third liver transplant was deemed unnecessary.

Millikan said Saturday that Stormie had not been feeling well since midweek.

"She doesn't feel good, she's tired," she said. "She hasn't been able to sleep for the past three nights. She's had it pretty rough."

Her daughter, Crystal, who was Stormie's best friend, said the ailing girl never felt comfortable under the media's glare and wanted more than anything to feel like a normal teen-ager.

"She wished everybody would treat her normal instead of like she had an operation, because she didn't like everybody asking her how she felt or if she was feeling okay," Crystal said, tears welling in her eyes.

"Nobody in the world was as sweet or kind as her. There'll be nobody like her," she said.

Stormie, who turned 13 in May, said she was starting work on an autobiography, which she had tentatively titled In the Darkness.

She said it was to be "about my life, my family, all the pet animals I've had" and about her lifelong fascination with frightening books, movies and television programs, such as the cable horror series Tales From The Crypt and the movie Pet Sematary.

"I feel better when I write my thoughts down," Stormie said.

"With Stormie's death, the world has lost a treasured friend," said a prepared statement issued by the Pittsburgh hospital. "She was an inspiration to children and adults alike. Her courage, her tenacity and her freckled face will long be remembered. The world loved Stormie in life, and will miss her dearly in death."

_ Information from the Associated Press and Los Angeles Times was used in this report.