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Her respectful and playful nature has made Julia Parmisciano plenty of friends over the last 79 days, but the 13-year-old yearns for nothing more than a reunion with her closest cronies.
When doctors at The Children’s Hospital of Philadelphia find her a heart, she will return to her house on the 2200 block of South 13th Street to delight in her new existence. Until her helpers deliver the monumental news and the accompanying organ, Julia will rely on her steadfast faith and family to retain her resolute attitude.
“Some days are good and some are bad,” she said Friday from her sixth-floor room adorned with prayer cards and posters of her music obsessions, Selena Gomez and the Jonas Brothers.
Julia has had to call CHOP home since May 18, when an episode at Epiphany of Our Lord School, 1248 Jackson St., led to her going into cardiac arrest. The dire day came three months after an echocardiogram revealed the worsening of her dilated cardiomyopathy, a condition that weakens and enlarges one’s heart and hinders the pumping of blood.
“Julia was diagnosed when she was 4 months old,” mother Grace Parmisciano said of her youngest of three children that she shares with her husband Francesco.
The matriarch revealed Julia had enjoyed stable health ever since, though her condition could cause life-threatening electrical activity disturbances, or arrhythmias.
“She had lived a normal life,”Grace Parmisciano said of time that included basketball, cheerleading, soccer and volleyball duties at Epiphany and three years learning the guitar on her own.
Transplant talk began right after the diagnosis, but no consensus emerged, so Julia received regular echocardiograms and electrocardiograms to monitor her cardiac tissue, valve function and electrical output. Rather than succumbing to sadness, she sought to see each day’s promise.
“I wanted to do things,” she said before preparing to take one of the seven medicines she ingests daily.
Fulfilling her fancy yielded fun, but also fatigue and shortness of breath. Her mother learned years ago that one-third of dilated cardiomyopathy patients will require transplants. With Julia’s minimal complications,Grace Parmisciano thought her daughter would remain in the majority. Because of the possibility of her experiencing dangerous arrhythmias, Julia must remain at the hospital and draw comfort from knowing her 1A status places her at the top of the transplant list.
“We just desire normalcy again,” Grace Parmisciano said while seated on the couch that doubles as her bed each night.
Julia has done her best to be a great example of resolve by interacting with friends, many of whom visit Tuesdays to watch her favorite show, “Pretty Little Liars,” working to sustain her strength through physical therapy and adding keyboard lessons to complement her guitar playing prowess. Even more of a semblance of the familiar will arrive when Dr. Beth Kaufman can tell Julia she has a gift for her.
“Weight and blood type determine matches,” Kaufman, medical director of the Cardiomyopathy and Heart Failure Program, said.
She had planned to see Julia as an outpatient before the school incident necessitated a more involved relationship. Kaufman revealed that a child’s heart will best serve Julia and that the orthotopic procedure, through which doctors will insert the donor heart into her left atrium after removing her damaged organ, would begin within 24 hours of securing a match. According to the American Red Cross, A positive blood, Julia’s type, is the second most common, leading to extra hope within the Parmisciano family.
“Her age will also help her survival rate,” Kaufman said, with the National Heart Lung and Blood Institute concluding the 10-year survival rate hovers around 50 percent, the 20-year mark stands at 16 percent and the figure on recipients who can approximate their normal lifestyles approaches 90 percent.
“We’re just looking to take one day at a time,” Grace Parmisciano said.
Julia possesses the patience of a saint, and she calls on numerous heavenly dwellers for assistance.
“I pray for a new heart every day,” she said while sitting on her bed and gazing toward a card of St. Pio of Pietrelcina, a figure she admires so much that she took “Pia” as her confirmation name.
Doctors have no timeline by which she needs to acquire her new heart, but her placement at the top of the recipient list has led her family to become even more reverent toward their creator.
“Our faith in God gets us through each day,”Grace Parmisciano said.
Belief especially aids Julia, who has had many moments when she has wondered why she has this fate.
“I become sad sometimes, but most days are good,” she said.
Family friends started the Hope for Julia Fund, with the aim of helping to cover the medical expenses July 26. Her constant focus on Julia has kept Grace Parmisciano from having an estimation of the debt and an idea on her insurance’s coverage, but www.transplantliving.org notes the typical first-year expenses average $787,700.
As mid-afternoon approached, Julia became eager to explore her surroundings. She cannot leave the floor without a nurse, who must bring a portable defibrillator and a heart monitor. For the last three weeks, she has used The Voice, a multimedia center where young patients can partake in activities related to radio, television and new media. They may broadcast as if disc jockeys, watch live artist performances or interview celebrities on closed-circuit television.
The center came as a gift from The Ryan Seacrest Foundation, named after the popular “American Idol” host, who performed the ribbon-cutting July 15 in CHOP’s Colket Atrium. He joined with Gomez, the 19-year-old star whose three studio albums have appeared in the top-10 on Billboard Magazine’s Billboard 200 chart, for the first broadcast, with Julia to the singer’s left.
“I was so excited to see Selena,” Julia said.
The budding musician enjoys playing Gomez’s tunes, along with Taylor Swift’s offerings and the Jonas Brothers’ creations, so taking out her acoustic guitar to join Gomez for a rendition of “Who Says” gave Julia a two-minute smile and a permanent memory, as her idol signed her instrument.
Julia has made many friends among the staff members and patients but pines for her return to South Philadelphia. Doctors will monitor her constantly when she has her new heart, and she will need to wait three months to resume her schooling.
“What I miss most is not being able to interact with my friends the way I want to,” she said.
After-school outings are the last fun endeavors she recalls, so she is eager to take a much-deserved vacation with family and friends, if schedules allow, once she trades her hospital space for her regular room.
“I look at my daughter, and I realize I’m wrong,” Grace Parmisciano said. “I used to think I was weak, and now I know I’m not.”
Many people yearn for large objects such as cars and houses. Julia wants an item that averages between 9 and 12 ounces.
“I’m homesick,” she said. “I am missing so much.”
For more information on the fund, visit www.hopeforjulia.org.
Contact Staff Writer Joseph Myers at jmyers@southphillyreview.com or ext. 124.
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