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.