OKLAHOMA CITY, OK (NBC) — A one-year-old boy, Ryder, was born with a disease so rare it affects only 1 in two million people worldwide.
Stone Man Syndrome, medically identified as fibrodysplasia ossificans progressiva, or FOP, is a debilitating disease that causes muscle to turn to bone.
The rarity of the disease makes proper diagnosis difficult. Ryder’s symptoms included, “Toe issues, not growing well, some delay in development, and (he) just wasn’t doing what a child is supposed to do at that age,” said Dr. Sownya Krishnan.
There is no cure, doctors can only do their best to manage the disease. Dr. Krishnan explained something as simple as a fall can trigger excess bone growth.
Specialists are working with experts in the field of treatment and research, and have identified a particular gene that may be responsible for FOP.
Dr. Krishnan said, “The life expectancy is pretty good, and there have been individuals living up to the age of 40.”
Ryder’s mom Chastity Kirkman said, “Every day, you know, do something fun with Ryder, or spend time with him… and just see one smile.. every day, that’s good enough for me.”