Jan. 22, 2008— -- Eight-year-old Shiloh Pepin is a force of nature. With a husky voice she can barely contain, and a level of enthusiasm that could derail a freight train, she has a way of expressing herself that is half grade-schooler and the rest someone who became too wise, too soon, about the prospect of spending her life under the care of doctors.
Shiloh is one of only three people in the world known to have a condition called sirenomelia, also known as "Mermaid Syndrome." She was born with her legs fused together, and her parents, Leslie and Elmer Pepin, knew it was possible that their child would be affected by the syndrome before Leslie gave birth.
Shiloh describes one part of her life as "dreaming good dreams." But she is also keenly aware of the complications of her medical history. "When I was about 2," she said matter-of-factly, "I had my first kidney transplant."
Doctors stressed that the condition is almost always fatal for a newborn.
"So if she had it," said Leslie, "we were worried we wouldn't be able to love her …[We] went through all these emotions, like you couldn't even believe. But she came out, and she had the biggest, blackest eyes. I remember [Elmer] saying, "She's beautiful."
When she did not die at home, as some had expected, Shiloh's parents brought her to the Barbara Bush Children's Hospital at the Maine Medical Center, where Shiloh saw Dr. Matthew Hand, a kidney specialist.
"Matt was the first physician who looked at Shiloh and saw a little girl who needed help, instead of a medical case that was uncertain," said Elmer.
Hand deferred to the parents in settling on a course of treatment. "The first thing I said to them was, 'What is it you want out of this?' They said three things. The first was that they wanted her to be home as much as she could, to be surrounded by her family. The second was for her to live as long as she could. And the third is that when it came time for her to pass away that she would be surrounded by people who loved her, and that she wouldn't be alone. And I said, 'Okay, we'll work with that, and we'll do the best that we can.'"
The cause is still a mystery, but it is not believed to be genetic. Doctors think that because the blood circulation system doesn't develop normally in the womb, kidneys and other organs don't form as they should.
Shiloh's fused legs were the visible evidence of her condition, but they were not the reason it was so dangerous, and so often fatal.
"She was missing a whole series of organs including her uterus and her bladder, and her large intestine," said Dr. Hand. "She had no vaginal vault or rectum, and no way for urine to get out of her body. Most of these babies die because of poor renal tissue makeup in their body."
But Shiloh did have a small section of a kidney in her back that ultimately had allowed her to survive until doctors could arrange a transplant when she was two years old. She had a second transplant in August of last year, the day after her eighth birthday.
In all, she has undergone more than 150 surgeries, many to reconstruct or compensate for the missing internal organs.
She also has become a well-known personality in her home town of Kennebunkport, Maine, where she loves to go bowling with friends, including Samantha Mitchell and Zack Kellett, her cousins and frequent companions.
"All the bumps and nudges in her, in her path, she's just overcome them," said Kellett.
"All the kids love her," said Mitchell. "She's like their role model, basically."
Some kids get crushes on a teacher; Shiloh has one on her doctor. She calls him "Doctor Hottie."
Shiloh's mother works for an insurance company. Her father cares for her full-time, fixing her meals and assuring that her medications are mixed and ready. He also provides comic relief, with jokes and other antics, when she needs it.
"They're my parents," said Shiloh, "and I love them so much."
The family has a Web site, Shilohbenefit.com, which accepts donations to help cover the expenses of Shiloh's care and posts news of her progress.
"We've always understood that she's supposed to be here," said Leslie. "When nobody else has believed it, we believed it, because it's just the way she is."
It would be possible to surgically separate her legs, but not so soon after her kidney transplant. Shiloh says she doesn't want the surgery, anyway. "Dr. Matt asked me if I wanted to get my legs separated, and I said no. I said, better just deal with it and stick with the 'no' answer."
In fact, one of her favorite activities is dancing. She has taken ballet classes and participated in a rehearsal for a dance recital, sitting and swaying on the stage (she missed the recital itself because she fell ill). She is able to move remarkably well by scooting her body across the floor.
"She has every reason in the world to be bitter and unhappy and miserable," said her father. "And she's the exact opposite. She's happy. She's vibrant."
What future she has, no one can say, because the only other known survivors of Mermaid Syndrome are also still living. Of the two, one is younger than Shiloh: Milagros Cerron. She was the topic of worldwide headlines early in 2005 when doctors in Lima, Peru, successfully separated her legs nine months after her birth. She will face a future of surgeries to reconstruct her internal organs.
The other survivor is Tiffany Yorks, 19, who lives near Tampa, Fla.. As far as can be determined, no one ever has survived Mermaid Syndrome as long as she has.
ABC News arranged a meeting between Shiloh and Tiffany in Portland, because the syndrome is so rare neither of the girls had ever been able to talk with another like herself.
"There's so few survivors," said Tiffany. "I think it's very important for us to get close just because there's no one else to look up to. There's no one above us that knows what we have to deal with."
Early in her life, Tiffany had surgery to separate her legs and walked until she was nine, when she fell and injured a knee. She is now confined to a wheelchair. The partial kidney with which she was born failed two years ago, and she needs a transplant before she can go on with her life.
Since both girls had spent so much of their lives under hospital care, Shiloh's question to Tiffany was straight to the point. "Does it get any easier?"
"Yes," Tiffany answered. "It can be scary, but I just look at it as something you have to do get to the final destination … to follow my dreams and be able to do everything I want to do."
Tiffany wanted to know what it was like to receive a kidney transplant. "Was it real painful? Do you remember?" she asked Shiloh.
"When it first happened I was frightened, but my mom said we're gonna get through this," Shiloh remembered. "She said, 'We've done this a thousand times and we're going to do it again just to make sure you survive.' So we did. I got through it. And that's all there is to it."
Because it was the first time in her life that Tiffany ever had seen snow, the two engaged in a brief snowball fight outside the hotel. When asked whether anything about Shiloh reminded her of herself when she was her age, Tiffany laughed and replied, "Her energy. A positive attitude really helps, too."
Tiffany could stay only for a day because she had to return to Florida for her dialysis treatment. Unable to continue attending high school because of her failed kidney, she worked hard to get her diploma through home schooling. She said that if she gets the kidney transplant she needs, her ambition is to be an intensive care nurse for children. To her and Shiloh, there are no such things as modest goals.
"We kind of know what it is to really fight for your life," Tiffany said. "One day I realized I've gone through so much just to be alive. I'm going to do what I want to do, to make my life the best that I can."
"Everyone is connected to one certain pole of life," Shiloh said. "And some of us are allowed to help other people who get sick and help them to feel better and … get them home with their families."
"I think I know what our purpose is now," said Leslie. "This is what I believe, is that [Shiloh] chose us and we chose her. And together, we make a family. Her gift to us is, I think, much more than we give to her."
If you're interested in learning more about Mermaid Syndrome, please CLICK HERE.