KENNEBUNKPORT-- It's an extremely rare deformity in which babies are born with their legs fused together. Known as "Mermaid Syndrome," the condition is almost always fatal.
But a eight-year-old Kennebunkport girl has beaten most of the odds. Doctors believed Shiloh Pepin would probably die after she was born.
"Because with Shiloh she didn't have kidneys, they said she wouldn't survive," said Shiloh's mom Leslie Pepin.
Shiloh's survival is nothing less than extraordinary. Sirenomelia, known as "Mermaid Syndrome," also occurs with significant internal organ problems. Shiloh is only one of three people in the world who have survived.
"She just started developing. We put her in pre-school, she started taking dance classes, she started growing and climbing up and down the stairs. She started getting in and out of her chair, meeting all of her challenges," said Leslie Pepin.
After years of dialysis and two kidney transplants, Shiloh believes she can do anything if she puts her mind to it. Soccer is one of her favorite sports.
"I usually want to try it and now I am really good at it and it's really fun," said Shiloh.
Shiloh still has signifigant needs. Her family wants a wheelchair lift to help her get in and out of her home. She also needs a prosthetic leg.
A benefit bike race and run for Shiloh will be held this Saturday in Arundel. It will take place at Bentley's Saloon parking lot on Route 1.
The proceeds will go towards Shiloh's medical costs. A special fund has also been set up in her name.
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