Shane Terry is a 4-year-old little boy in Watertown, NY who has one of only 600 confirmed cases in the world of fibrodysplasia ossificans progressiva, or FOP, a disease which causes bone to form in muscles, tendons, ligaments and other connective tissue.
“When he was first diagnosed, I wanted to keep him in a bubble,” Kimberly A. Hayes, Shane’s mother, told the newspaper. “Through an FOP group online, I learned that I need to let him be as much of a kid as I can. I have to look at every situation to see which would be safest for Shane.”
The life expectancy of this disease is only 41 as there is no known cure.
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