This Maine girl who had ‘mermaid syndrome’ shows what really makes you a star

If you watch anything this weekend, make it this documentary about a little girl from Kennebunkport who had a very rare condition often called “mermaid syndrome.”

Shiloh Pepin was born with legs fused from the waist down. With no lower colon, no bladder, no genital organs, and only one partially working kidney, doctors told her parents she would likely survive just hours, possibly days.

She lived to age 10 — one of just several known people in the world to survive the condition called sirenomelia.

The documentary by Firecracker Films came out in 2009 and aired on TLC and the Discovery Channel, her father, Elmer Pepin, said. But admirers are still sharing it online. He said he still gets messages from people all over the world who have been inspired by his daughter.

“She had every reason to be miserable, but she was exactly the opposite,” Pepin said. “She lived every day like it was her last. I’m very, very happy to have been there to share that with her.”

He was holding her hand when she died of pneumonia at Maine Medical Center on Oct. 23, 2009.

“It felt like I got struck in the chest by lightning,” he said. “It was like someone put a wrecking ball through my soul.”

To add to the grief, his wife and Shiloh’s mother, Leslie Pepin, died Oct. 1, 2014.

More than ever, Pepin wants to share Shiloh’s messages of hope and is working to have a book written.

“She never said, ‘I can’t.’ She never quit,” he said. “‘It’s what’s inside that makes you a star.’ That’s one of her famous quotes. She came out with that on her own.”