All in the family

STUARTS DRAFT — Kayla Renee Abshire sits quietly on the couch, watching CMT when her favorite Alan Jackson song comes on.

The soft-spoken, unassuming 11-year-old with red hair and a shy smile then begins to mouth the words to “Country Boy” as her dog, Sparky, quiets for a moment and lays beside her. Her 1-year-old sister, Whitney, is a bundle of energy around the house; her father is using the computer in the next room as her mother entertains a guest.

It’s an otherwise normal moment on a lazy, Saturday afternoon — until Kayla begins to itch in the area around her catheter.

Kayla, on Jan. 13, had her kidneys removed at the University of Virginia Medical Center and goes there for dialysis three times per week, taking multiple medications while awaiting a transplant.

When Lori Abshire was 3 months pregnant with Kayla, she learned her daughter would be born with congenital nephrotic syndrome, which causes protein that normally stays in the bloodstream to be excreted through the kidneys, causing scar tissue to build both on and inside the kidneys.

It’s a rare form of nephrotic syndrome that occurs genetically, primarily in those of Finnish descent, though rarer forms exist. Doctors have sent Kayla’s blood to Finland for analysis, though the family has yet to learn of any conclusive cause.

“She’s a mystery to them,” Lori says.

Doctors told Lori, 37, and her husband, John Christopher Abshire, 36, that Kayla would have to have a kidney transplant sometime during her teens. The doctors also advised the couple to read up on the disease, though the more they read, the more they became disturbed — to the point that they stopped reading about it.

“It upset me,” Lori says. “It scared me because I didn’t know what it was.”

Living with the disease has been a challenge for the Abshires, as they have to closely watch Kayla’s diet to make sure she eats low-sodium products. And now that her kidneys are out, Kayla also has to watch her phosphorus and potassium levels — “hers is at dangerous levels” while controlling her high blood pressure.

She also has to deal with thyroid and cholesterol problems. Two of her favorite foods – pizza and macaroni and cheese – are mostly out. And she’s not allowed to eat certain types of cheese, dried beans and tomatoes. It makes going to the grocery store a challenge.

“We was in there about two hours the other day,” Lori says. “We didn’t get much, but we try.”

While continuing medical treatment, Kayla, who just celebrated her birthday Jan. 29, is keeping up as much as possible with her schooling — going to classes for half-days on Tuesdays and Thursdays. She nods her head when asked if she hurts: “Sometimes,” she says.

“I think she’s taken it fine,” Lori says of Kayla. “She don’t show much emotion. ... Everybody says she’s brave. She goes along with everything.”

The transplant is coming soon.

Doctors decided to remove Kayla’s kidneys last month because they had diminished in function to 15 percent. In a matter of weeks, Lori will give up one of her own kidneys for her daughter.

“I’d do anything for my girls,” Lori says.

Kayla will check into U.Va. Medical Center on March 4, and Lori will come in the day after, when the transplant will take place. Kayla will stay in the hospital for a about a week, and then will spend six weeks recuperating before going back to school.

In another 20 years, Kayla will likely need another kidney transplant, but after the procedure and subsequent recovery, she will be able to resume normal activities without restrictions, though she will have to be slowly weaned off her 15 different medications.

“After it’s all over, she’ll be able to do and eat what she wants,” Lori says.

Kayla looks forward, she said, to getting back to school full-time, but expressed a slight bit of trepidation over the excitement her classmates will have when she returns.

“I’m afraid to go back there ’cause they might trample me,” Kayla says as she laughs.

Kayla is the shortest person in her class.

“They just miss you,” her mom says. “So they’ll just swarm on you when you first walk in.”

“Probably the whole fifth grade,” Kayla says.

As the Abshires have done throughout, they take things day-by-day with how Kayla feels and what they do. It’s up to God, Lori says.

“We’re just waiting for the time to come so we can get it over with, because it does exhaust you,” Lori says.

“It ruins plans,” Kayla says.

Mom and daughter share a laugh.

Want to help?

While insurance covers most of the Abshires’ costs for Kayla’s treatment and medications, they have held numerous fundraisers in an effort to make up the difference, and the Kayla Renee Abshire Fund has been established at DuPont Community Credit Union to help also. To donate, send a check in care of the Kayla Renee Abshire Fund to the DuPont Community Credit Union, P.O. Box 1365, Waynesboro, VA 22980.