Carli Henrotay of St. Louis was always an active and adventurous toddler. She loved to swim, run, and play soccer. Then she turned 5 years old, and life was never again the same.
One day, doctors noticed Carli's big toes were shorter than her other toes. This was because she was missing certain bones, which tipped doctors off to a very rare and progressive disease.
Carli became one of approximately 800 people diagnosed with fibrodysplasia ossificans progressiva. There is no cure for FOP, and patients have a life expectancy of around 40.
FOP is often referred to as "Stone Man Syndrome" because it causes muscle and tissue to change into bone. Over time, these new bones form a "second skeleton" that greatly inhibits one's mobility.
Since her joints are typically in a locked-up state, Carli is unable to raise her arms above her head, bend at the waist, or stand on two legs. According to Barcroft TV, "her back is 'a sheet of bone,' she uses a wheelchair to get around and she lives in a constant state of physical pain and fragility. Even the most minor injury can cause extra bones to form and grow inside her."
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Carli is now an adult. It's incredible to see how she has learned to adapt to her limitations and make adjustments so she can live as active and normal a life as possible.
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Watch the video to learn more about what people refer to as 'Stone Man Syndrome'.
