Many don’t know what FOP is because it is very rare. FOP stands for Fibrodysplasia Ossificans Progressiva (yes, it is a mouthful!). I’ll give a brief overview of what it is before I introduce the person I want to write about.
FOP is an extremely rare connective tissue disease with only 800 known cases in the world. The disease is caused by a mutation of the body's repair mechanism, which causes fibrous tissue (including muscle, tendon, and ligament) to be ossified spontaneously or when damaged. In many cases, something as little as a bump or a fall can lead to days or even weeks of pain for the person with the disease. The days following even the smallest injury can be painful. What happens after an accident is what is called a flare-up. A flare-up is when the inflammation of the injured area occurs, and the ossification of the surrounding area happens because the bodies idea of “repairing” the injury is turning it to bone. Surgery is also no help. When trying to remove the extra bone in the injured area, the body will again try to “repair” or recover from the surgery again with more bone. The cause of FOP has been found, but there is still no treatment or cure. If you would like to know more about FOP, visit www.ifopa.org for more information.
Now that I have given a small intro to FOP itself, I would like to introduce you to someone I know who has grown up with it. His name is Cody. My mom and his dad have been together since we were 4, so about 16 years now. I remember my first time going to meet Cody. My mom had to explain that he was a special person and may look a little different from me. I remember understanding completely. When I met him, I didn’t really see how he was different, I just noticed he was a fun person to play with. It was when he had trouble standing up or eating certain foods that I noticed he had some complications.
When school started, our parents were nervous of what other kids would think so they made sure we were in the same class. They soon found out that there was nothing to worry about, because everyone absolutely loved him. Just like the first time I met him, they looked past his differences on the outside and saw his personality instead. The kids never judged or saw Cody as different, but they weren’t afraid to ask questions, and Cody was not afraid to answer them. In kindergarten, our teacher had Cody’s doctor come in and talk to the class about the condition, and everyone loved learning, even the adults!
As Cody and I got older, things like walking, writing, and eating became harder for him. All the teachers at school had no problem helping Cody with anything. At home, he couldn’t do simple things like get his own food or snacks, get his own drink, roll over at night on his own or get dressed/shower on his own. Luckily, we grew up in a loving family. My mom had my two older brothers and I, and Cody’s dad had him and his older sister and older brother. We all were there to help Cody with whatever he needed. I remember before he was confined to a wheelchair, Cody would sit on the couch all the time, but would need help standing up. That was one thing, besides helping him get certain things like food, that I could help with and I always did help, and so did everyone else.
I always remember getting mad when we were out in public and I would see people stare. There is no reason to stare. If you have questions, Cody and everyone in the family are more than happy to answer questions! We’d rather you ask questions about FOP so we can get the word out there than you stare and judge. I always knew Cody was a great person, so when people would judge, I got mad, and so did others in the family, but Cody never let it bother him
Through school, we always had fundraisers and walks to support and raise awareness for FOP. The school would sell Little Debbie snacks at lunch and donate all proceeds to FOP research. We had walk-a-thons where we would ask for donations for our miles walked. Outside of school we had Poker Runs, with fees to be able to ride and auctions and food. We brought awareness as much as possible, and Cody loved talking and informing others of what he had.
When Cody was confined to his wheelchair is when things got more difficult. It took away his ability to walk everywhere by himself. It took away stuff like sports, and driving. But that didn’t stop him from being happy. In about 5th grade, Cody got a cool new electric wheelchair that he got to “design” himself. He chose the viper blue color, the camo pattern on his seat, and even the chrome rims. It was the coolest thing and we were all so excited for him.
In middle school, Cody got to go on a deer hunt and shot his first deer. He got a 10 point. About a year or so later, he got the opportunity to go on another hunt where he shot a 14 point. This just proved that he could do anything he set his mind to.
Now, Cody is almost 21. We grew up together, lived together, and went to school together our whole lives. One thing I have noticed about Cody, as I am sure everyone else in his life has also noticed, is that FOP doesn’t change how great of a person he is. It doesn’t stop him from loving football (Go Pack Go as he would say), it doesn’t stop him from being an awesome son, brother, or uncle. It doesn’t stop him from loving unconditionally everyone in his family. It didn’t stop him from graduating high school. It isn’t stopping him from going to college. It doesn’t stop him from living life. Cody said that he won’t let FOP “stop him from living life as normal as possible”. The only thing he says it stops him from is playing sports or “getting a job doing something physical, like working in construction”. Cody is just like every other 21-year-old guy out there. He loves video games and pizza and watching the super bowl and buying all the cool new electronics. He is just like you and me, except he is an inspiration. He lives with this every day and never complains. He may be hurting from a flare-up, but when asked if he is okay, he answers that he is fine, even if he isn’t. We often complain about the smallest things when it could be worse, and here he is in so much pain, but doesn’t want anyone around him to feel bad. He always puts others feelings first.
So, what has living with someone with FOP taught me? It taught me that a disease that some lives with doesn’t define who they are. Cody may have FOP, but that is not all he is. He’s much more than that. It has taught me that you should never take things for granted. One thing you may dread doing is something someone else wished they could do. It has taught me to love my life. It has taught me respect. It has taught me not to judge. It has taught me to always help others. I am beyond to lucky to have grown up with Cody, because he has taught me so much in life just by being himself. Although we may have fought when we were younger, I know now that I’m lucky to have grown up with him. Cody truly is an inspiration.
Please, if you have read this whole story and do not know much about FOP, please please look into it! www.ifopa.org is a great place to go for all information! You can learn about others, and learn how to help with research or donating. Bringing awareness is the greatest thing!
