One of the great joys of the last two years of Shiloh Pepin’s life was a wet suit.
With the custom-made suit, Shiloh – who had a rare condition known as ”mermaid syndrome” – could swim and play with friends in the water, her fused legs and health issues largely forgotten.
”It was beautiful,” Shiloh’s mother, Leslie Pepin, said Saturday, the day after her 10-year-old daughter died. ”She was free in the water.”
Pepin said her daughter’s legacy will be her perseverance.
”Anybody that has a problem, it’s not insurmountable,” Pepin said, ”and you can do it with a certain style.”
Shiloh Pepin overcame her problem – she was one of three people in the world known to suffer from sirenomelia – and exhibited that style for a decade.
When she was born, doctors did not expect her to live past infancy with the congenital disorder that fused her legs together, her feet at the bottom of a single appendage. She also lacked several organs and had only a partial kidney. She had had two kidney transplants.
She lived despite the odds and had been doing fine this fall, starting fifth grade at Kennebunkport Consolidated School.
”She’s had a great stretch,” said Shiloh’s aunt, Alicia Kellet, noting that Shiloh did a lot of swimming this summer at a children’s camp and a family camp on Swan Pond. The wet suit, Kellet said, allowed Shiloh to swim in the pond without fear of infection.
Shiloh took part in picture day at school on Oct. 9, but was sent home early because she had a cold. Early the next morning, her condition worsened and Leslie Pepin called an ambulance to take her daughter to Maine Medical Center.
Dr. Matthew Hand, Shiloh’s physician, said the cause of death was a blood infection, caused by her kidney shutting down, pneumonia and other complications.
”It went down quite fast,” Kellet said. ”She survived everything else. We never saw this coming.”
Pepin said her daughter often offered up what the family called ”Shilohisms” that still made her mother chuckle Saturday even as she grieved.
When Shiloh was younger, before she understood the rarity of her condition, she would wonder when other people’s legs would fuse together as hers had, Pepin said.
Pepin said she hopes to set up a fund to which people can contribute in lieu of flowers. She said she’d like to use the money to buy more playground equipment for handicapped children.
Leslie and Elmer Pepin made a point of sharing their daughter’s story, appearing on ”Oprah” and in numerous newspaper and magazine articles. That turned out to be a wise choice, Pepin said.
”Because we shared her, people would come up to her and talk to her in Walmart and she got the constant reinforcement that she was special,” Pepin said. ”Not special because she was handicapped, but special because of her personality.
”Her life made a difference,” Pepin said. ”Her courage and her spirit – people really got it.”
Kellet said she knows how her niece would be feeling now.
”She’d be so angry that she’s dead,” Kellet said. ”She loved life. Everything was a joy to her – and she was to us.”
Calling hours will be 2 p.m. to 4 p.m. and 6 p.m. to 8 p.m. Tuesday, at Bibber’s Funeral Home in Kennebunk. A memorial service will be held at 11 a.m. Wednesday at St. David’s Episcopal Church, Route 1, Kennebunk.
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