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.
Photo Gallery, Story: Union to present ‘Wizard of Oz’
Too nice. Too tall. Too funny.Actors in Union High’s musical production of “The Wizard of Oz” transformed and fine-tuned their personalities in preparation for tonight’s opening performance. The task presented challenges for director Diana M. Borowski’s cast.
Union sets kindergarten, pre-K registration
Registration for kindergarten and pre-K students in the Union school district will be March 27 and 28. To enter the pre-kindergarten program, children must live in the district and be 4 years old before Oct. 1.
Union French classes to continue on computer
French classes will continue at Union High School, but they will be cyber classes. Dr. Alfonso Angelucci, district superintendent, Wednesday confirmed that former French teacher Angela Berger had resigned last month.
Union teacher named state executive director
Beginning March 1, the Pennsylvania Association of Student Councils will have a new executive director for the first time in 37 years.
Football News: Union grad to suit up for Team Europe — and Team USA
Jordon Rooney will be a busy man next month. And that has very little to do with Christmas. The 23-year-old will compete in a pair of football games a little over a week apart near the end of December.
Group helps Union students, teachers
A robotics program continues to grow in the Union Area School District. Fifth- and sixth-graders enjoyed Education Day at PNC Park. And two jazz band clinics also were able to take place.
Union Township honors fallen son
Yesterday’s prayers and Veterans Day remembrances in Union Township were for all veterans and soldiers. But special recognition was given to fallen Army Staff Sgt. Edward Mills Jr., whose name was unveiled on a monument at the municipal building and on a stone near the flagpole at the high school.
High School Softball: Conforti takes over at Union
There is a new leader in the Union High softball program. Anthony Conforti, 47 of Ellwood City, was hired to replace Gary Trimble as the Lady Scots’ coach. Trimble served as Union’s coach for nine years.
Union teachers, board approve four-year pact
The Union Area School Board and the district’s teachers have approved a four-year contract. By a 9-0 vote Wednesday, the board approved the pact that will run through June 30, 2017.
Homecoming 2013: Check out our video, interview from Union!
It's that time of year again when the hard-hitting action of Friday night football gives way to the elegance and pageantry of homecoming. Every Wednesday, look inside for special photo galleries featuring all attendants on this year's courts. This week: Union!
- More Union Headlines
- Photo Gallery, Story: Union to present ‘Wizard of Oz’