Infants with this condition are born with fused legs that resemble a mermaid’s tail, and often have internal organ abnormalities. This rare disease usually comes with a grim prognosis, and affected children typically do not live long.

When Shiloh was born, doctors predicted she wouldn’t survive beyond four days due to severe health complications. However, she bravely underwent multiple surgeries and surpassed all expectations, leading an active life.

Shiloh was vibrant and sociable, engaging in sports, dancing, and swimming despite her serious illness. She had a penchant for bright, beautiful clothing and jewelry. Her intellectual abilities were exceptional, often surpassing those of her peers. Shiloh also had a fondness for butterflies, frequently drawing them and adorning her room with butterfly-themed decorations.

Family and friends recall that Shiloh never complained about her condition. Instead, she often expressed that her illness didn’t stop her from enjoying life.

Shiloh lived for 10 years—remarkably longer than most children with sirenomelia. She eventually succumbed to pneumonia, which developed from a cold. Despite the doctors’ efforts, they couldn’t save her.

Shiloh Pepin is remembered by her family, relatives, and friends as an extraordinary child with a big heart.