Robbie Gorecki - Spring 2005

My name is Robert Gorecki. My family and friends call me Robbie or Rob. I’m 18 years old and have lived in Brookfield, WI, all my life. I was born with a craniofacial anomaly called Goldenhar syndrome, which caused a facial cleft.

I was missing an eye and an ear and the roof of my mouth (palate). My mom tells me I had my first reconstructive surgery when I was three and half months old. Somewhere after two dozen or so operations she lost count.

My syndrome doesn’t affect my mind’s ability, but having a lot of operations when I was little set me back a bit. I didn’t walk until I was two years old and I didn’t know my alphabet until second grade. I never liked being in the “special” classes but it helped, and I’ve caught up. I will be graduating from high school this June.

People are pretty nice for the most part, but kids can be mean. I have an older brother, Erick, and when we were younger, he protected me a lot when people would stare. But we each went to different grade schools and jr. highs, and by the time I got to high school, he had already graduated. I had to learn how to deal with the mean kids and fend for myself. Sometimes I’d just stare back. Sometimes they tried to get physical and pick a fight. I didn’t back down and they usually left me alone. People seem to fear things they don’t understand.

I have a reconstructed ear and a fake eye. Other than looking different, my main challenge is my speech, particularly speaking clearly enough for people to understand. Even with one eye and one working ear, I can do everything anyone else my age does. I drive a car (truck). I also own and ride a motorcycle.

I’ve liked motorcycles for as long as I can remember – maybe because we live in the Milwaukee area, home of the Harley. Bikers are nice to children, and while growing up I made a lot of friends in the motorcycle industry.

I think having CCA’s support while I was growing up made a big difference in my life. I’ve been involved since the start, and I’ve only missed one family retreat. I met other kids like me, and my whole family found out that we aren’t the only ones dealing with craniofacial problems.

Every year the retreat was our family vacation. I’d also get to visit the Harley-Davidson dealership in whichever city it was held to add to my pin collection for my biker vest.

My parents put up with my interests, but are not looking forward to my desire to get tattoos. I have scars on my arms and chest from surgery, and I figure a tattoo is no worse! I tell my mom, “God put me on this earth looking different; I might as well run with it.”

When CCA started their summer fundraiser in 2001 raffling off a motorcycle, I became the charity representative/ poster boy. Each year we travel to Sturgis, SD, and I’m in my element with all my biker buddies. After graduation, I will attend MMI (Motorcycle Mechanics Institute) in Phoenix, AZ, in the fall.

I am not afraid to go out into the world and live my life, and I hope I inspire any younger kids with craniofacial difficulties to do the same.

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