Some children who have survived sirenomelia have had surgery to separate their legs, but Shiloh did not because blood vessels crossing from side to side in her circulatory system would have been severed. She had received two kidney transplants, the last one in 2007.
Her story was featured recently on “The Oprah Winfrey Show” and other national television programs.
Earlier this month, her mother, Leslie Pepin, said her daughter came down with a cold that quickly turned to pneumonia. Shiloh was rushed to Maine Medical Center on Oct. 10 and was placed on antibiotics and a ventilator.
Shiloh was a fifth-grader at Kennebunkport Consolidated School. “She was such a shining personality in that building,” said Maureen King, chairwoman of the board of the regional school district. Counselors will be available next week to talk to students.
Through the television shows, news articles, Facebook and other Web sites, Shiloh inspired many.
“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.”
In this Dec. 20, 2007 photo, Shiloh Pepin laughs with her parents while sitting on a counter in the family’s Kennebunkport, Maine home. Pepin, who was born with fused legs, a rare condition often called “mermaid syndrome,” died Friday, Oct. 23, 2009. She was 10.
