...""" (CNN) -- Sarah Murnaghan fully understands
all she's been through: her lifelong battle with
cystic fibrosis that led to her deteriorating
lungs, the campaign her parents waged that
temporarily changed national policy
surrounding organ transplants, and the fact
that she came so close to death in the days
leading up to her two double lung transplants.
"She said, 'Mommy, I knew I was dying,' "
Janet Murnaghan recalls. "That was like a
very crushing moment for me. And she said 'I
just didn't want to tell you I was dying
because I didn't want to upset you.' "
Her parents say that was the toughest part.
"She asked, 'If I go to sleep, will I wake up the
next morning?' " remembers her father, Fran
Murnaghan.
Today, spirits are vastly different than they
were two months ago, when Sarah -- who's
had cystic fibrosis since birth -- was in dire
shape after being on the waiting list for
pediatric lungs for 18 months. Her first
transplant was a failure. After keeping Sarah
alive for days by circulating her blood outside
of her body to keep oxygen flowing, she
received a second transplant. Aside from a
brief scare with pneumonia, this one was a
success.
Now Sarah and her family are preparing to
head home for the first time in half a year.
"I'm very excited," Sarah says, with a low,
raspy voice, because of the tracheostomy tube
that remains in her throat. "I would like to
play with my brothers and sister."
She also has plans to go horseback
riding and try her hand on a soccer
team. All things, the family now
believes, she's very likely to
accomplish.
Speaking exclusively to CNN for the
first time since the surgery, Janet
and Fran Murnaghan say 11-year-
old Sarah could be discharged from
Children's Hospital of Philadelphia
as early as Tuesday.
"We haven't been a family in a
while," Janet says. "It's ... hard to
be a family when half the family
lives at CHOP (Children's Hospital of
Philadelphia) and half lives at home."
Sarah's parents say her lung biopsies show
0% rejection of her new lungs, and on
Saturday she was officially taken off her
oxygen machine. However, she still needs
mechanical assistance — and will for some
time -- until her diaphragm regains it's
strength.
"The lungs are doing great," Fran says, adding
that at this stage it's all about rehabilitation
of Sarah's muscles. "What's really exciting is
that we know we are on the road to recovery
now."
Because she was in a medically induced coma
and essentially paralyzed for more than three
weeks, Sarah's body needs to relearn many
things, including how to walk. Her physical
therapy sessions can last for three hours each
day and include weightlifting and cardio
components.
Though the process of recovery will be a long
one — Janet estimates nine months to a year
— Sarah is up for the challenge.
Asked if she considers herself a tough girl,
Sarah says, "Yes, very."
"Because every time I faced things that I
thought were going to be hard, then I've done
them."
Janet says when things get difficult, she and
Fran do their best not to let their emotions
show, especially around Sarah. But they admit
it's happened.
"She'll say, 'Mom what's wrong?' I said, 'It's
just hard Sarah. You worked so hard today,
and you're obviously so exhausted. I wish life
were easier for you.' And she said to me, 'But
it's not easy, and that's OK.' "
Dr. Sanjay Gupta on Sarah's story
And that's been Sarah's mantra: "I'm not
going for easy, I'm just going for possible...
And what's in front of me right now is
possible."
Janet and Fran are quick to call Sarah a
fighter, even though anyone who meets her
knows it from the start, and these days they
have more confidence than they've had in
months that they'll be able to see their
daughter live out a life that's closer to normal.
"I fully plan to watch her graduate from
college and watch her get married someday
and do whatever it is she wants to do," Janet
says. "I just don't think they're going to be as
easy for her to obtain those things as
somebody else, but I think she is going to
have them."
It isn't lost on anyone in the Murnaghan
family that their daughter may not be here
today if it weren't for the fierce public battle
the two parents waged that started with
Facebook and quickly spread to the national
media.
Janet and Fran's fight has temporarily
changed national policy, making children
younger than 12 eligible for priority on adult
lung transplant lists.
"This is an issue that will always matter to
me," Janet says, adding that she'll keep
fighting because the country needs "a better
plan" for distributing organs.
For now, though, their focus remains on
helping Sarah get her strength back.
"I think you'll see Sarah a year from now as a
kid going into sixth grade, walking confidently
back into school like every other sixth grader,"
Janet says. "(It's) not going to happen
tomorrow, but it will happen."
"She's going to get what she wants, and we're
going to get what we want, which is just a
regular kid.""""

Thanks, Walks...this endless promotion of fear and ignorance on these boards is getting exhausting.

Thank you for sharing that..

I hope they do a follow up in a year, so we can know if the kids going good. lol.

@WalkSoftly1: we all look forward to the good news story at the end of the news,especially if its like the one you've told,good news is ALWAYS better than bad,because we all smile

Very nice and enlightening story

Train wrecks sell....and the media knows it...as does Miley Cyrus acting like a sl.ut.....ecstacy must be a helluva drug lol

Yeah saw that on news bout the lung transplant thats a good thing.

Ecstasy IS a helluva drug...uhmmm...wait.

@WalkSoftly1: that's really touching it makes me shed tears as i was reading her story. I'm really happy for her and pray that she survive all other challenges she might be facing