LIKE MOST little girls, the first thing on Sarah Murnaghan's mind when she got home yesterday was playing with her siblings and her dolls.
Of course, it was even more special for the 11-year-old Newtown Square girl to return home for the first time in six months after being released from Children's Hospital of Philadelphia after two double lung transplants this summer.
"Sarah's looking forward to being a regular little kid, to going outside and playing with her friends," her mother, Janet Murnaghan, said during a news conference in front of the family's home. "She'd like to be on a soccer team. She used to horseback ride and ice skate, and she's looking forward to doing those things again."
"We're looking forward to Sarah having a nice, long life, going to college, getting married, having a family and doing everything that we dream for our other kids.
Dressed in a pink gown, her face swollen from medication, Sarah sat on a plush dining chair on the family's lawn at the end of the news conference. She modestly waved to the media and said, "Hi."
When asked by a reporter how she was feeling, she initially indicated "good," her mother said. Moments later, she tempered that, whispering "so-so."
Sarah, whose battle with cystic fibrosis and 18-month wait for a transplant led to a national change in lung-transplant rules, still faces an uphill climb because she was immobile so long, waiting for lungs. She has been taken off oxygen, but will require a tracheostomy tube in her throat until she builds up her breathing muscles, the family said. She recently began walking short distances with a walker, which her mother described as "a huge challenge."
The good news, however, is that Sarah has not shown any signs of rejecting her new lungs, the family said. She must go to rehab at CHOP once per week and to a King of Prussia facility three times a week.
"We still have a long journey in front of us," Janet Murnaghan said. "Sarah has a lot of rehab in front of us, you know. She's doing fantastic, but this is really the beginning of the next chapter."
Despite being exhausted from the trip home, the family said Sarah made bracelets with her 8-year-old sister and played video games with her brothers, ages 5 and 7.
"She just wanted to be with her brothers and sister," Janet Murnaghan said. "I mean she really just wanted to be with her family. It's been hard being separated as a family for six months."
The family said Sarah will be schooled at home through the local district, starting Sept. 9, as the family tries to get their lives back to normal. They acknowledged that the last few years have been a long, difficult journey.
"We're very proud of what Sarah's achieved, and she's been so strong, and she's really done so much to get herself here, getting home today," her father, Francis, said.
Sarah was admitted to CHOP in February, and had been waiting 18 months for a transplant when her parents filed a lawsuit requesting that she be put on the adult waiting list. A federal judge granted the request and ranked her in order of her medical urgency.
On June 12, Sarah received the first set of adult lungs, but suffered severe complications and had to be put on a ventilator. She underwent a second transplant a few days later, but then got pneumonia from having a tube in her throat.
Her parents thanked the two donors, whose families they have not been able to reach because of privacy laws. They said they support permanent changes in the lung-transplant rules that would prioritize patients by the severity of their illness, rather than age.
"We're not letting go of it," her mother said. "We got really blessed and Sarah got the lungs in time, but there are other kids who haven't.
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