By Molly Lovell
Staff Writer

Taking into account the number of television, newspaper and documentary interviews she’s done, 10-year-old Shiloh Pepin said she could be considered a super model, or even a role model.
After traveling to Chicago last week, Shiloh can now add an interview with Oprah Winfrey to the list.
Shiloh and her parents, Leslie and Elmer Pepin, of Kennebunkport, taped a segment on medical miracles that will air in September, detailing a disease Shiloh was born with called sirenomelia. Also known as mermaid syndrome, sirenomelia is a congenital deformity causing a person’s legs to be fused together, giving the appearance of a mermaid’s tail.
Leslie said staff at the Oprah show was “phenomenal,” but they didn’t have contact with Winfrey besides the interview.
Shiloh is one of three survivors of sirenomelia in the world and the only one who hasn’t undergone surgery to separate her legs.
Leslie said while the syndrome is most common in males, the only surviving people in the entire world with the syndrome are females.
“Women are survivors. Shiloh is a survivor,” she said, adding that doctors didn’t expect Shiloh to live for more than a couple days.
The Pepins said they are used to being in the media spotlight; in 2007 the Discovery Channel filmed a one-hour documentary titled “Little Mermaid Girl.”
A crew from Discovery was in Kennebunkport once again this summer filming a follow up that will air Oct. 11.
“The more people who know about her and know how strong, powerful and happy she is, the less freaky her situation will seem,” Leslie said.
Leslie said people stare at her daughter, but it doesn’t bother her or Shiloh.
“We’re a very loud and boisterous family. Directing attention to ourselves on our own terms helps. This is our ‘normal,’ ” she said.

“A normal 10-year-old,” is how Leslie describes her daughter, who is entering fifth grade at Consolidated Elementary School in Kennebunkport.
“She’s very dramatic,” she said, adding that Shiloh loves movies and often quotes from them.
According to Leslie, Shiloh says kids sometimes treat her daughter differently at school, but Leslie doesn’t know if that’s true, or if it’s one of the movies talking.
Shiloh said Monday that kids at school are nice to her and, like a lot of kids her age, she has mixed feelings about going back to school next week.
“It’s boring,” she said of her math and science classes.
However, Shiloh is looking forward to reading and writing classes, where she likes to tell tales about princesses and love stories.
She also is looking forward to seeing her best friend, coloring and playing at recess. Because she wants to be a jeweler when she grows up, Shiloh said she’s excited about making necklaces this year in school.
And, after years of painful surgeries and treatment, Shiloh is looking forward to simply being a healthy teenager.
Due to her condition, she was born with a partial kidney and received a kidney transplant at four and a half months old, and then underwent another transplant in 2007.
“I was in a lot of pain and I stayed in the intensive care unit,” Shiloh said.
Leslie said Shiloh spent a lot of time on dialysis and didn’t gain sufficient weight while she recovered.
“The goal was to get her to eat anything. Now, all she knows how to eat is the bad stuff,” she said with a laugh.
At 98 pounds, Leslie said Shiloh is a little overweight and encourages her to swim for exercise.
For her birthday in August, Shiloh received a Wii game system that incorporates all types of physical movement.
While Shiloh is feeling healthy these days, with two kidneys that “work beautifully,” Pepin said Shiloh must take anti-rejection medication that costs $1,100 a month.
Leslie said insurance has covered a majority of medical costs, but because the medication isn’t covered, the family applied and has qualified for the state’s Katie Beckett program. The program is a MaineCare option for children with serious health conditions.
 Surgeries and treatments for Shiloh may be covered by insurance, but Leslie said it’s the everyday costs that add up, and the reason why the family hasn’t been able to move from their second-floor apartment.
Leslie Pepin said she makes too much money at her job working for Unum to qualify for assistance that could include a stair lift in her home, which would cost $4,000 or an elevator, which would cost $14,000.
The Pepins have applied to be a candidate on “Extreme Makeover: Home Edition,” but don’t qualify because they rent the home they’ve lived in for six years.  But now that Shiloh’s health has stabilized, Leslie said a new home might be the family’s next goal, although she would like to stay in the area because she is across the street from her sister and close to her mother.
Though she can handle stairs, Shiloh said her ideal home wouldn’t have any and it would be “big.”
Leslie said she suspects the media will always be interested in her daughter, and that’s OK.
“Shiloh mentioned in a documentary that she likes butterflies and all of a sudden people from all over the world started sending her butterflies.  Shiloh is a very lucky girl.”
The family has set up a fund to which people can donate money to help with the costs associated with Shiloh’s condition.  For more information visit www.shilohpepin.com.