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Hope for Julia's heart

A Lower Moyamensing teenager awaits a transplant
 that will resume her fun-filled life.


By Joseph Myers

Add Comment Add Comment | Comments: 9 | Posted Aug. 4, 2011

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Julia Parmisciano has been learning guitar on her own for three years. Last month, the teenager had a chance to play her instrument for pop music sensation Selena Gomez, who signed it after the two performed together. 
 Members of the Hope for Julia Fund, above, sold bracelets Tuesday on the 2400 block of South Alder Street. Julia Parmisciano, right, holds a stuffed animal that her parents gave her for Christmas. 


Photo by Greg Bezanis 


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.


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COMMENTS

Comments 1 - 9 of 9
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1. Dottie C. said... on Aug 4, 2011 at 08:51AM

“After reading this story, this is yet another reason why I donate money every month to the CHOP Foundation. With all the problems that people face each day, this has to be the hardest for anyone with a child who needs a heart transplant. I'll pray for you Julia and I will ask the Blessed Mother to intercede on your behalf. Over the past twenty six years I have had 23 prayers answered. I'll be praying that you'll be my 24th. Keep strong Julia and may God be with you always.”

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2. Nicole Hill Frazier said... on Aug 4, 2011 at 10:15AM

“I met Julia while I was here for my daughter. Amongst all this she and her family are bright and kind to the people around them. Long live Julia and may she always have lemon for her drinks.”

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3. Donna Cuculino romsteadt said... on Aug 4, 2011 at 10:19AM

“My heart goes out to Julia's Family and i am so proud of my sister in law Lexie and my niece Alyssa for helping raised money for julia she will be in my prayers.”

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4. Lindsey Wood said... on Aug 4, 2011 at 10:24AM

“My son Micah is diagnosed with DCM as well and is also on the heart transplant list (in an inactive status now). We had the wonderful pleasure of meeting Julia and her family while at CHOP. Julia you look great! Our prayers are with you.”

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5. Rob Ingram said... on Aug 4, 2011 at 05:18PM

“Just donated my last few dollars to a woman on the street by Marconi Park, my heart and prayers go out to Julia and her family. I wish you all the best.”

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6. Roe Garczynski said... on Aug 4, 2011 at 07:26PM

“Julia, you and your family just hang in there. I know what an ordeal this is. been there done that with my dad while he waited for his heart. i just know you will get one real soon. Before you know it you and my niece Madison will be right back on utube playing guitar and singing. you and your family are in my prayers. god bless you all.”

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7. Anonymous said... on Oct 7, 2011 at 02:45PM

“I feel bad for julia”

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8. vee said... on Oct 8, 2011 at 07:52PM

“julia, i go to your school and was on the third floor when this happened and me and my classmates were terrified, and we said a prayer while we were alone, hoping you were okay. i pray for you every night and me and my friend are raising money for you. i hope the nurses find you a heart soon.”

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9. maria said... on Oct 14, 2011 at 07:08PM

“prayers are with you julia, and your family:) dont ever give up sweetie:)

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Beating the odds

After more than six months at The Children’s Hospital of Philadelphia, Julia Parmisciano, front, prepared Dec. 2 to return to her home on the 2200 block of South 13th Street. The brave girl had a heart transplant Nov. 22 and received the love of brother Joseph, from left, father Francesco, mother Grace and sister Francesca.