I was born with Goldenhar syndrome which caused a facial cleft that affected my speech and left me with just one eye and one ear. I’ve had lots of craniofacial surgeries (my mother says she lost count after a couple dozen), from the time I was an infant through high school, while I was still on my parents insurance. I have a reconstructed, though non-working, left ear. I wear a prosthetic left eye.
I was three years old when I met Cher backstage at her Heart of Stone tour in early summer 1990. This “meet and greet” was arranged by my neurosurgeon who was on CCA’s Medical Advisory Board. Cher had become the organization’s Honorary Chair/Spokesperson after she portrayed the mother of a boy with a craniofacial condition in the movie, Mask.
My mother and I were among families gathered by the organization to attend a special event the following September in Washington, D.C. We addressed a Congressional hearing focused on insurance coverage needs and toured Washington D.C. together. The event featured a fundraising dinner and auction with Cher, who also went with us to the White House. We kids were invited to spend private time with Cher later in her hotel room and the moms joined those of us too little to be alone. The parents shared with Cher how wonderful it was to be able to relax among the other families while touring the city, exposing our facial differences to the usual staring and whispers of passersby. None of us were even conscious of any of it while in the group of about ten families; we were insulated because we were together.
It was Cher who suggested we gather again for some sort of camp or retreat in order to feel that supportive strength at least once a year. Yes, Char Smith was there too, and she only needed to hear that once. The very first retreat was the following June in Orlando, Florida and I am still friends with most of those families we first met in Washington D.C. Some of us also appeared on the Maury Povich Show with Cher the following year and still participate in CCA activities, especially the Retreat. The Annual Retreat is really like a big family reunion.
I’ve also liked motorcycles for as long as I can remember – maybe because I live in the Milwaukee area, home of the Harley. Every year, the Retreat weekend became our family vacation. During these vacations, I would get to visit the local Harley-Davidson dealership in the different retreat destinations, in order to add to my pin and patch collection for my “biker” vest.
Because my “biker” aspirations were well-known, in 2000, when CCA started a motorcycle raffle, I became the charity representative, the “poster boy,” for the event. In just five years we traveled to Sturgis, South Dakota for the raffle during my teens, I met a lot of famous people and made a lot of friends in the motorcycle industry. I even learned to ride a motorcycle and was gifted my first bike out there. Those connections I made through the organization inspired me to travel across the country to attend MMI (Motorcycle Mechanics Institute) in Phoenix, Arizona after high school graduation.
I also attended Cher Conventions every other year from 2000-2008 with another longtime friend, Scott Guzzo, and we met many Cher fans who were raising funds to benefit Children’s Craniofacial Association in her honor. I was happy to represent CCA there and at many other fundraising events throughout the years.
The Cher fans still know and support me as friends today, almost 20 years later.
I think having CCA’s support while I was growing up made a big difference in my life. I’ve only missed one Retreat, I met other kids like me, and my entire family found comfort in knowing we aren’t the only ones dealing with some of the common problems we share living with facial differences.
Knowing I had that “extended family” from CCA through the years bolstered my resolve to just be myself and to go out and live my life. I’ve traveled all over, twice to Europe, once by myself, with confidence that I can do anything any other average person does. I am not afraid to go out into the world, and I hope I inspire younger kids facing similar challenges to do the same.
No comments:
Post a Comment
We welcome and encourage all readers to post feedback, however, we reserve the right to remove any comments that are deemed offensive or unrelated to the topic of discussion. Thank you for understanding and for helping us to foster a healthy environment for the families that we serve.