Joe Brooks - Summer 2010

Hi, I’m Joseph Brooks. I’m 20 years old and live in Stafford, Virginia, which is about 40 miles south of Washington, D.C.

I am a freshman at the University of Mary Washington (UMW) in Fredericksburg, Virginia, which is another 20 miles south of Stafford. I am majoring in psychology. I am not really sure what I want to do after college, but it may have something to do with aviation.

In fact, my favorite hobby is anything to do with aviation, including aviation photography. I love to fly, and my favorite kind of plane is the Boeing 777. I am also a fan of the Boeing 737. In my spare time, I like to play Flight Simulator X, a pilot simulation game for the computer, and I like to listen to live air traffic control feeds from liveatc.net. I also enjoy watching airplane videos on YouTube. I have posted a couple of videos related to aviation on my YouTube page. My username is airplanecrazy1989.

I live with three sisters— Jerilyn, age 22; Carrie, age 15; and Cathryn, age 11. I also have an older brother and sister—Jenny and Jeremy. I love my family. We have had a lot of adventures together, such as getting our flight delayed from 10 p.m. to 2 a.m. in Honolulu, or driving across the country after landing in L.A. Disney World trips are also a fun family event.

I love music, and I play percussion in the UMW Concert Band. I was in marching band for all four years of high school, and I really enjoyed every minute of it. Marching band was a lot of hard work, but it was also a great experience. I enjoyed playing at the football games and going on the Florida trips in the spring. We marched the Spectro Magic parade at the Magic Kingdom both my sophomore and senior years—definitely something I will never forget.

I am also a diehard Dallas Cowboys fan. I got to see the new Cowboys stadium, and I watched my Cowboys triumph over the Redskins 7-6. The game was very boring until the last five minutes, but the stadium was like nothing I’d ever seen before. When I saw it for the first time from the outside and inside, I was in awe of how gigantic it was.

I was born with a rare condition called Oto-Palatal- Digital Syndrome type II, and I have endured 42 surgeries because of this. Eighteen of those surgeries occurred between April and June 2009 when I went in for a Le Forte III procedure. All went downhill when the doctor cut my perfectly good VP shunt—I spent a total of about three months in the hospital.

I almost made it to the retreat in Dallas, but I got sick the day before I was to get out of the hospital, which was two days before my flight to Dallas. So the retreat in Boston was my first. It was amazing to meet everyone.

My advice for younger kids with craniofacial syndromes is to just be yourself. If someone is making fun of you, you should try to be nice to that person. If the teasing continues, then just walk away and tell someone, maybe a friend or a trusted adult.

If someone is continuously being mean to you, don’t waste your time on them. Stick with your friends and the bully should not bother you. Also, a good way to make friends is simply by being kind to others.

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

Toll-Free Hotline

Physician Listing

Qualified Centers

Family Networking

Educational Booklets

Information and Support

Financial Assistance

CCA Newsletter

Cher’s Family Retreat

Public Awareness