Julia and her new heart are home for Xmas

As the months in the hospital went by - two, then three, then six - what 13-year-old Julia Parmisciano kept hoping for was to be home for Christmas.

She told her mother she didn't want any presents. She just wanted to be with her family, like usual.

On Saturday, a Christmas tree sparkled in the living room. And there beside it sat a petite girl with long brown hair, eating an egg sandwich.

Julia - and her new heart - had made it.

She grimaced as she took her last pill of the morning - No. 7, and they're big.

But then she looked up with big brown eyes and smiled the smile that one of her doctors said "could light up the universe."

She's not scared any more, she said. Not like when she was in the hospital, hooked up to a monitor, and aware that at any moment, her heart might stop working right.

Like on May 18.

Julia, an eighth-grader at Epiphany of Our Lord School, not far from her South Philadelphia home, collapsed in religion class.

The staff knew about Julia's condition. The school nurse, Ann Smeigel, is there just one day a week, but that was her day. As soon as she heard a commotion upstairs, she somehow knew. She raced up the steps and began cardio-pulmonary resuscitation, which would continue for another 45 minutes.

Julia awoke in Children's Hospital of Philadelphia, connected to a web of tubes and devices.

She remembers that she asked her father, Francesco , what had happened. He said she had fallen. She went back to sleep.

But it was much more serious than that.

Julia was born with a normal heart. But at four months of age, she was hospitalized with an abnormality - perhaps caused by a virus, her doctors said.

The term is cardiomyopathy, a disease of the heart muscle. The physicians told Julia's family that about a third of children with it get better, a third stay the same, and the remaining third wind up needing a heart transplant. Or, they die.

Initially, Julia got better.

She was active in school. The night before she collapsed, she had gone to the school sports banquet. She played volleyball and was a cheerleader.

At CHOP, Julia's medical team hoped an implantable defibrillator would work.

But "when we brought her in for that, she had another arrest," said one of her cardiologists, Kimberly Lin.

Julia would need a new heart. And she couldn't go home until she got one.

She was there for six months. "Every day knowing that day could be the day she'd get her new heart," Lin said. Or the day she might have another cardiac arrest.

"This is a little girl living with a lot of uncertainty, and she handled it with a lot of grace," Lin said.

Not that it wasn't difficult.

Julia's mother, Grace , slept on a couch in Julia's room every night. When Julia would wake up crying, wondering why this was happening, Grace would hold her daughter and tell her that she was right, that life wasn't fair, but that they had to believe there was some meaning in all this.

"I have a lot of faith in God, and I know he was by my side the whole time and he got me through," Grace said.

Julia's sister, Francesca, visited daily. Joey, her older brother, came back from Italy. Her father stopped in before opening his restaurant, Da Vinci Ristorante, on 11th Street, and after it closed.

"Her family was an unbelievable support for her," said Meredith McDonough, the child life specialist at CHOP who tried to make things as normal as possible for Julia.

She had physical therapy. She was tutored. She brought her guitar, and when pop star Selena Gomez visited CHOP to help open "The Voice," a multimedia center for patients, the two sang a duet.

But Julia's string of "courage beads" was growing. Day by day, more beads were being added, one for each prick of a needle, each X-ray, each echocardiogram.

According to the U.S. Department of Health and Human Services, each day about 77 people receive organ transplants. But another 19 die each day because they haven't been able to get a transplant.

Julia became friends with many of the other young cardiac patients at CHOP. One had gotten a transplant and lived. Another did not.

In all the community's coming together to support Julia and her family, one group in Delaware was making a prayer shawl. With each crochet stitch, the person doing it said a prayer.

It arrived at CHOP on Nov. 20. Grace put the shawl around her daughter and they prayed. As Grace folded it and put it away, she vowed that they would repeat the ritual every night.

The next day, the doctors had good news. There was a heart for Julia.

That day, McDonough tried to familiarize Julia with everything that would happen and what to expect when she woke up - using a teaching doll and letting her touch the breathing tube.

"I was excited because I knew I'd be going home sooner," Julia said. "But I was scared because it's a big surgery."

Families do not know who or where the donor is. But as the time for the surgery neared, Grace thought of the donor's family. Just as she was gaining hope, they were relinquishing it.

Transplant hearts need to be the right size. Julia is 77 pounds. Grace figured the organ was coming from a child.

She began praying for the unknown family.

Not long after midnight on Nov. 22, Julia hugged her family and the friends who had been allowed to stay with her. Then the medical staff took her away on a stretcher.

Hearts can vary. Transplant surgeon Stephanie Fuller was anxious. How well would the new heart work?

But at the end of the 45-minute procedure, she was flooded with relief as she saw the organ perform. "It beat beautifully from the get-go and had great function."

Within 24 hours, Julia was up and walking. Two weeks later, on Dec. 2, she went home.

When Julia came out of the hospital, a limosine was waiting. The driver had rolled out a red carpet.

When she got home, her classmates were lined up outside, cheering.

Last Saturday, two Mummers groups serenaded her.

"The thing I learned most about Julia is the amazing resilience that she has and the amazing love of her family, and together what that can do," said CHOP's McDonough.

In February, if all goes well, Julia will be able to go back to school.

And when she grows up, she wants to be a nurse."And I want to work with kids," she said, "with cardiac patients."

She'll be on lifelong medication to keep her new heart healthy, and she will be at risk for complications.

But "she'll be able to eventually do all the normal things normal children and young adults do," Lin said. "This kid has been through a whole lot, and has kept her sparkle."

That string of courage beads is now several times as long as she is tall.

Hung on a railing outside the door of her home is a banner with Julia's photograph and the words, "Where the believing never ends."