“One person can make a difference, and everyone should try.”
-John F. Kennedy
What is FOP?
Eli Wallace is by most accounts your typical eight-year-old boy. He's sweet and funny, wild and snuggly, and smart as a whip. He loves the Green Bay Packers, Pokemon, and YouTube videos of people doing ridiculous things. On any given day you might find him in a second-grade classroom, off and running with his older brother and friends, or playing with a beloved pet.
But Eli's typical kid life was turned upside down recently, and nothing looks quite the same anymore. In September 2016, Eli was diagnosed with an exceedingly rare genetic condition called Fibrodisplaysia Ossificans Progressiva, or FOP.
If that sounds ominous, it's because it is.
One of the rarest, most disabling genetic conditions known to medicine, FOP causes muscles, ligaments, tendons, and other connective tissue to turn to bone. Movement is restricted as bridges of bone form across joints, and the body is essentially imprisoned in this 'second skeleton.'
There is currently no effective treatment or cure for FOP.
Fibrodisplaysia Ossificans Progressiva, or FOP, is a condition caused by a random genetic mutation that occurs at conception. To say this is a rare disease is almost an understatement. A rare disease in the United States is defined as such if it affects fewer than 200,000 people. There are 285 known people with FOP in the U.S. and about 800 known cases worldwide. One in two million people are born with FOP.
Sometimes referred to as Stone Man Syndrome, FOP causes muscles, tendons, and ligaments to turn to bone. Movement is progressively lost as joints freeze due to extra bone growth. The bone growth is preceded by a 'flare,' swelling of muscle tissue sometimes caused by an injury or virus, but most commonly occurring spontaneously. As the inflamed tissue heals, the body goes into overdrive and turns it to bone. These bones cannot be surgically removed as the trauma of surgery would only cause more bone growth.
Because of its rarity, FOP is often misdiagnosed, or missed altogether, which can be just as damaging as mistreatment. Some common medical procedures, such as vaccines, can cause irreparable damage in people with FOP. There's an easy-to-spot clue, however, that gives away the genetic mishap: malformed big toes. Most people with FOP have shorter-than-normal big toes that are missing a joint. If all doctors knew this, FOP could be diagnosed at birth and proper care could start immediately.
Learn more at www.ifopa.org
Researchers around the world are working tirelessly to find a treatment, and ultimately a cure, for FOP. They have made significant progress. But funding opportunities are scarce for diseases that affect so few. 75% of FOP research funds are raised by the families and friends of people with FOP. And now that we've discovered we are just that, it's time to get to work.
Here's how you can help:
Please donate if you are able. All funds go directly to research and even the smallest amount has an impact. Eli's mobility is already affected by FOP, and a treatment cannot come soon enough.
Share this page far and wide. Awareness is critical so children born with FOP can receive the specialized care they need.
And lastly, please send Eli some love; this is a tough road to travel, but your positive energy can make the journey a little smoother.