NEW CASTLE —
Zoey Smith wanted a number.
“How many vials?” she asked insistently as a lab technician at Children’s Hospital in Pittsburgh drew still another one from her arm during a late-February visit.
“Don’t worry, honey, it’s OK, we’re just about done,” the technician said soothingly to her 12-year-old patient, trying to draw her gaze away from the rows of tubes filled with blood.
Zoey and her mother, Tracy Llewellyn Smith, both break into gales of laughter at the memory.
“I wasn’t worried about the blood or the needles,” Zoey said. “I wanted to break the record.
“My old record for vials at one time was 11,” she added. “This time she took 19. Nineteen. I’m going to have a tough time breaking that.”
It is this outright pluckiness that has gotten the Union Area Middle School seventh-grader through the greatest ordeal of her young life.
Since she was a young child, Zoey has experienced health problems that have culminated in recent years with a diagnosis of a rare disorder known as Joubert syndrome, which has led to Stage 4 kidney failure.
Zoey’s need for a transplant has reached near-critical stage and she is being prepped for one later this year, when she receives the kidney of a compatible extended family member.
The bright-eyed Girl Scout hopes that the transplant will put her on the road to a normal life, one in which she can return to school and eat some of her favorite foods, such as chocolate and ice cream.
For now, though, Zoey waits and just tries with all her might to be a normal kid.
THE EARLY YEARS
Zoey was born visually impaired. Although she has 20-20 vision, she cannot move her eyes horizontally, causing some learning delays throughout her early school years.
After years of testing, she was diagnosed with Joubert, a genetic disorder that affects the cerebellum, an area of the brain that controls balance and coordination, explaining her visual problems.
She later developed muscular problems with her legs, severe stomach pains and other issues, such as a sensitivity to water.
“She can’t run bath water,” Tracy said, “because it will burn her hands.”
During follow-up testing at Children’s, she was diagnosed with nephronophthisis, a genetic disorder of the kidneys.
Tracy and her husband, Gary Smith Jr., learned that patients with this disorder usually need a transplant between the ages of 13 and 15. Since Zoey will be 13 on July 3, they knew her time was drawing near.
Zoey needs special food and must be on a no-phosphate, no-cholesterol diet.
“I can’t have any of the fun stuff like chocolate and ice cream and peanut butter,” she said.
“She can’t have anything processed and no whole wheat,” Tracy added. “She is able to eat pasta and rice and luckily she likes things like fruit and broccoli, so she eats a lot of that.”
In recent months, Zoey’s creatinine level, which indicates kidney function, has risen to 2.9 (normal range is 0.05 to 1). When the number reaches 4, the transplant will become imperative. Since a donor already is in place, she will not have to undergo dialysis while waiting.
Zoey will be hospitalized for 10 to 14 days following the transplant, with the donor home in three to five days.
By her side in addition to her parents during her ordeal will be big sister, Kayla, who is 14 and an eighth-grader at Union.
“She is my best friend,” Kayla says, reaching for her sister’s hand as Zoey gives a nod of agreement.
Zoey has received homebound instruction since November by Linda Spaulding, who is a teacher at Union.
It is one of the rare times that Zoey and Kayla are separated.
“Until recently when she got a little sicker and started to get home-schooled, we slept in the same bed — we both wanted it that way,” Kayla said.
“They have their own beds,” Tracy said. “They just always chose to sleep in the same bed. They’re that close. Kayla watches over Zoey. I have never seen two sisters who were closer.
“Although I have to say that if it had been Kayla that this had happened to, we would have had a rougher time,” she added. “Kayla faints at the sight of blood, while Zoey counts the vials. In that way, they couldn’t be much more different.”
Tracy is able to make the frequent trips to Children’s because she works for her brother, Dave Llewellyn, at Pizza Joe’s in New Wilmington. Gary works at Kaleel Brothers.
Tracy’s mother, Louise Llewellyn, watches Zoey while her parents are at work.
When Zoey gets her transplant, her current kidneys will not be removed, but the new kidney will take over. She will need to take medication twice a day for the rest of her life.
Although the Smiths have medical insurance, the cost of traveling to appointments in Pittsburgh, often several days a week, along with medication, have placed a financial strain on the family. Yet the Smiths are willing to do whatever it takes to give their daughter a healthy future. A benefit spaghetti dinner to help with expenses will be held April 28.
“She’s been through so much,” Tracy said. “But she’s a pretty happy kid. Nothing much gets her down.
“On even the worst days, she’s a joy to be around.”
For Zoey, she is looking to the transplant as the first day of the rest of her life.
“I just want to get it over with,” she said. “I’m not scared, I’ve had every test there is and some of them were pretty bad, so I think this will be OK. I just want to be able to enjoy stuff again.”
NEW CASTLE —
Zoey Smith wanted a number.
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