Nine years ago, Zelene Turner watched helplessly as her infant daughter shook from seizures, lost hair and turned red without a fever – symptoms that took weeks to diagnose.
Then doctors discovered the truth: Jayla lacked a thymus gland and suffered from DiGeorge syndrome, a rare immune disorder that leaves victims vulnerable to the common cold, usually fatal by age 2. She turned to her husband, J.J., and said, “Our baby is going to die.”
But Jayla Turner did not die, thanks to the thymus transplant surgery that is only performed at Duke University Hospital. She walked into Duke for a follow-up exam on Wednesday – a fourth-grader who likes “Charlotte’s Web” and recess.
At 9, her immune system is healthy enough now that she can tolerate measles and mumps vaccines. “Look at the VIP today,” said a nurse who passed Jayla in the hall at Duke. “Y’all got a miracle.”
But this year, a new shadow has fallen over the Turner family. J.J. Turner, Zelene’s husband and Jayla’s father, died on the day after Thanksgiving at their home in Perquimans County. He was watching television at night and died of natural causes at 52 – likely a heart attack, his wife said.
His death strikes an especially hard blow because J.J. was the Turner family’s sole breadwinner, a maintenance man at the U.S. Navy contractor Raytheon in Norfolk. Co-workers have started raising money for the family on gofundme.com, and the total stood at $3,300 Wednesday, well short of the $10,000 goal.
“It’s going to be a different kind of Christmas,” Zelene Turner said. “When we go home, he’s not going to be there. Sometimes he’d even have dinner for us when we got home. Jayla asks a lot of questions every day. She had him wrapped right around her little finger. ... They all play Legos together. Dolls. Catch in the yard. Go outside and ride a bike. They had something to sell at school? He jumped on it. ... They called him J-to-the-J.”
In 2008, Duke immunologist Dr. Louise Markert told the Turners that Jayla’s missing thymus gland, essential for building an immune system, could be replaced with a transplant. Donated thymus tissue implanted in Jayla’s leg could help her generate T cells that fight infection.
Markert, who developed the surgery in the early 1990s, said Thursday about 80 of the surgeries have been performed at Duke, and 70 percent of those patients are alive.
“The first patient we transplanted is now 22,” she said.
Jayla’s immunology issues require only yearly checkups, Markert said. But numerous other medical issues keep the Turners traveling 180 miles from Hertford to Durham about once a month. Jayla receives Medicaid coverage, her mother said, but she and her two teen-aged daughters relied on J.J. Turner’s health plan, which will expire in February. Jayla’s older sister, Jazmyne, 18, attends N.C. Central University, and her younger sister, Zariah, 16, plans on college soon.
“I’m scared,” Zelene Turner said. “I’ve got to find something quick.”
But the family’s thoughts turn more acutely toward J.J., the family’s rock, who helped hold down the house while Jayla went through life-saving surgery. At Duke on Wednesday, Markert recalled how the family raised $10,000 in tiny Hertford to help with transplant costs Medicaid would not cover.
“Of course, I have (Jayla’s) picture in my office,” Markert said. “I have a picture of Jayla and her dad. What a wonderful human being. He was a very calming, wonderful man.”
How to help
An online campaign to assist the Turner family can be found at www.gofundme.com/in-memory-of-jj-turner.