March 4, 2010

Maine girl with 'mermaid syndrome' dies at 10

DAVID HENCH

— By

click image to enlarge

Shiloh Pepin eats lunch at Consolidated School in Kennebunkport in December 2007. “She was such a shining personality in that building,” said Maureen King, chair of the board for RSU 21. “She was friends with just about everybody.”

2007 Press Herald file

click image to enlarge

Shiloh Pepin, then 8, looks at a book in December 2007. Shiloh was one of three people in the world with sirenomelia, a congenital disorder that left her legs fused together.

2007 Press Herald file

and TREVOR MAXWELL

Staff Writers

PORTLAND — Shiloh Pepin, a 10-year-old girl from Kennebunkport who had a very rare condition often called ''mermaid syndrome,'' died Friday afternoon at Maine Medical Center.

Shiloh had been hospitalized in critical condition since last week. She died at 1:35 p.m. in the hospital's special care unit.

Since her birth, Shiloh had defied the odds.

Doctors told her parents that she would likely survive for only hours, maybe days. As she grew into a smart, funny and headstrong girl, Shiloh inspired people around the world with her positive attitude and resilience. Her story was featured recently on ''The Oprah Winfrey Show'' and other national television programs.

''I wish I had better news,'' said hospital spokesman John Lamb.

He was unable to provide details about the medical circumstances that led to Shiloh's death. Lamb said Shiloh's parents, Leslie and Elmer Pepin, requested privacy for the family on Friday.

Shiloh was one of only a few children to survive past infancy with sirenomelia, known as mermaid syndrome. Her legs were fused at birth into a single appendage, with feet at the bottom. Only two other people in the world are known to be living with mermaid syndrome.

Shiloh was born without several of her organs and received two kidney transplants. Her second kidney transplant was done at Maine Medical Center when she was 8.

Some children who have survived with sirenomelia have had surgery to separate their legs, but Shiloh's circulatory system made that challenging because blood vessels crossing from side to side would have been severed.

Maureen King, chair of the board for Regional School Unit 21, said Shiloh's death will have a ripple effect on the entire district, especially at the Kennebunkport Consolidated School, where Shiloh was a fifth-grader.

''She was such a shining personality in that building,'' King said Friday night. Counselors will be available next week to talk to students.

''She really was such a wonderful person. She was friends with just about everybody. My sympathies go to her parents,'' King said.

Nearly 1,400 people are signed up as fans on Shiloh's Facebook page. Her last post on the page came on Oct. 7. Shiloh reminded people to tune in to ''Mermaid Girl: The Next Chapter,'' a show about her that aired on the TLC network on Oct. 11.

Through the television shows, news articles, Facebook and other Web sites, Shiloh inspired people who otherwise would not have heard her story.

''I live in Iowa. I have cerebral palsy. I love your video,'' 12-year-old Lydia Dawley wrote to Shiloh on Facebook. ''You have a great personality I wish you lived close so we could be friends and hang out. You opened my eyes because you are so brave.''

Staff Writer David Hench can be contacted at 791-6327 or at:

dhench@pressherald.com

Staff Writer Trevor Maxwell can be contacted at 791-6451 or at:

tmaxwell@pressherald.com

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