Health Care

Girl's immune deficiency nearly cured

Yet another intravenous needle sticks Jayla Turner's tiny arm, and the only consolation for hearing the baby's cries is the knowledge that soon, she will be free of such assaults.

Jayla, born 15 months ago without a key gland to build her immune system, appears to have been given a cure.

"This is what you call a real save," said Dr. Louise Markert, the transplant surgeon at Duke Hospital who developed the procedure that has rescued Jayla and about 56 other children nationwide born without a thymus gland -- a rare condition called DiGeorge Syndrome.

The gland produces T cells, which are the immune system's fighters that seek and destroy germs and other threats. Without a thymus, Jayla was destined to die of an opportunistic illness, likely before her second birthday.

Her quest for a cure was chronicled in a series, "Saving Jayla," that ran in spring in The News & Observer.

Since Jayla's operation in March, in which a portion of a donor thymus gland was implanted in her leg, the transplanted tissue has thrived and is now producing the all-important T cells. But her immune system remains weak until a full army of fighter cells develops. Markert believes that may occur by January. Meanwhile, Jayla must receive intravenous infusions of immune globulin to boost her body's ability to ward off diseases.

And so every two weeks, her mother, Zelene, drives more than three hours from the family's home in Hertford, in northeast North Carolina, to the Duke Children's Hospital for the life-saving therapy or other treatments.

The regimen has taken a toll. Blood vessels in the crook of Jayla's arms can no longer accommodate needles, even with the expert care of pediatric nurses.

"There's so much scar tissue in her vein, it won't go in," nurse Wendy Steiger says as she prods a needle through the skin, searching for a vein. Jayla moans. "It's OK to use her feet?"

Zelene Turner nods, slips off the baby's Mary Janes and then her frilly white socks, and the process begins anew.

For Zelene Turner, the episodes tear at her heart, as her baby wails in pain. The journeys to Duke have also added days away from her other daughters, Jazmyne, 10, and Zariah, 8, and strained the family's finances. Turner has been unable to work regularly as a hospital registration clerk. Keeping Jayla free of illness has required spotless housekeeping, constant handwashing and frequent clothes-changing.

As a result, her husband, James, is the sole breadwinner with his work in maintenance at a Virginia naval base.

Their trailer is in need of repairs. The heating and air conditioning unit broke in August, requiring $5,000 to replace it. There's rent, and car payments and the regular grind of regular people who have faced a rare disease.

A group of women who have formed a giving circle in Durham, the 20/20 Sisters of Vision, has been trying to help the family, but needs outstrip its resources.

"The greatest thing to offer is a little hope," said the Rev. Joanne L. Browne Jennings, who leads the group of about 11 Durham women. The group meets monthly and pools resources to help others. "They kind of fall in the middle. Financially, they are not at the bottom of the scale, so they're in the wrong spot for so many services that might otherwise be offered to them."

Despite the family's hardship, the journey for Jayla has reaped rewards beyond measure.

"She's going to be a normal little girl," Zelene Turner said, scooping the child into her arms as if she would never let her go.

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