ccanewsletter of the children’s craniofacialnetwork association Cher — honorary chairperson spring 2005 inside cca kid andrew perry . 2 cca grad robbie gorecki. 3 fundraising news. 5 cca programs. 5 message from the calendar of events . 5 chairman facial palsy . 6-7 Andrew and Karin Perry having fun at a retreat. e are a very special odd fellows. 8 wcommunity. We donors . 9 andrew’s story share things that many by Karin Perry others — sometimes not cut-a-thon, dallas . 10 even close friends or relatives — understand. 3 cheers . ecoming a mom is a hard job. No one prepares you 10 Patients, parents and bfor what will be the most difficult (and rewarding) job siblings, and the staff, craniofacial of your lifetime. When you become a mom of a child with volunteers and supporters acceptance month . 12 special needs, it is even more difficult. When I had my son, of CCA look a little deeper, Andrew, I was a first-time mom — and I was single. understand a little fuller My pregnancy was complicated throughout, and I had 2005 Retreat Info what it means to love a many ultrasounds. Despite all the prenatal testing, no one person for who they are — The 15th Annual Cher’s was prepared for the complications at Andrew’s birth. I not how they look. Family Retreat will be at remember that things went terribly wrong. Andrew was It’s really a wonderful the Gaylord Opryland Hotel rushed away from me, and then doctors told me that he benefit of being involved in in Nashville, TN, on June would be taken to Children’s Hospital in Boston. I was told CCA. We become more 23–26. For more informa- that he had a multitude of problems, including a severe sensitive to the feelings of tion, contact Annie Reeves facial deformation. No one could tell me exactly what was at 800-535-3643 or those around us because wrong with him, but they did not feel confident that he [email protected]. our horizons have been would make it through the night. broadened. Yes, we see If you make your own Suddenly I was making medical decisions for a baby I cruelties, but we also see reservations, please let had seen only for a moment. I was alone in a hospital, wonderful examples of them know that you are recovering from a c-section, giving permission by phone kindness and bravery. with Children’s Craniofacial for doctors to do surgeries on my tiny premature baby Association or use Group who I had not even touched or held. Code X-CCA05. see andrew, page 4 see chair, page 11 empowering and giving hope to facially disfigured individuals and their families ccakid meet andrew perry ndrew Perry is fear- far with a few more to go. aless. The 11-year-old Luckily, he celebrated his from Hopkinton, MA, has first full year without any perfected his snowboarding operations.Congratulations, technique so much he now Andrew! boards down the most Right now, he has just difficult trails possible — about finished the fifth Andrew Perry double-diamond! grade. He enjoys Math and He is also very brave. Science the most. This sum- play video games and col- show and visit her back- He’s had 20 operations so mer he’ll have more time to lect Pokémon and Yu-gi-oh stage. Last time he sat on cards. He’ll also pursue his the front row. This time he other outdoor hobbies: was further back, and Cher swimming, camping and wouldn’t have any of it. She fishing. had Andrew move seats so He’s also going to the that she could see him dur- upcoming retreat in ing the show. How cool is Nashville, his third retreat so that? far. If you haven’t heard his Andrew has gone rendition of Cher’s song, through much in his young “Believe,” you’re missing life. Twenty operations is a out! He stole the show, and lot to endure. But his family the mike from the DJ, last and good friends, Cameron year. Hopefully he’ll sing for and Nathan, have stuck us again. with him through the rough As for Cher, she and times. His advice to other Andrew are good friends. In CCA kids is to be brave. fact, he saw Cher in concert And on the practical side, on Tuesday, April 12. This is he offers this advice: “Don’t his second time to see her eat too soon after surgery.” 2 meet robbie gorecki y name is Robert how to deal with the mean mGorecki. My family kids and fend for myself. and friends call me Robbie Sometimes I’d just stare or Rob. I’m 18 years old back. Sometimes they tried and have lived in to get physical and pick a Brookfield, WI, all my life. I fight. I didn’t back down was born with a craniofa- and they usually left me cial anomaly called alone. People seem to fear Goldenhar syndrome, things they don’t under- which caused a facial cleft. stand. I was missing an eye and I have a reconstructed an ear and the roof of my ear and a fake eye. Other mouth (palate). My mom than looking different, my tells me I had my first main challenge is my reconstructive surgery speech, particularly speak- when I was three and half ing clearly enough for peo- Robbie Gorecki months old. Somewhere ple to understand. after two dozen or so Even with one eye and Every year the retreat When CCA started their operations she lost count. one working ear, I can do was our family vacation. I’d summer fundraiser in 2001 My syndrome doesn’t everything anyone else my also get to visit the Harley- raffling off a motorcycle, I affect my mind’s ability, but age does. I drive a car Davidson dealership in became the charity repre- having a lot of operations (truck). I also own and ride whichever city it was held sentative/ poster boy. Each when I was little set me a motorcycle. to add to my pin collection year we travel to Sturgis, back a bit. I didn’t walk I’ve liked motorcycles for for my biker vest. SD, and I’m in my element until I was two years old as long as I can remember My parents put up with with all my biker buddies. and I didn’t know my – maybe because we live in my interests, but are not After graduation, I will alphabet until second the Milwaukee area, home looking forward to my attend MMI (Motorcycle grade. I never liked being of the Harley. Bikers are desire to get tattoos. I have Mechanics Institute) in in the “special” classes but nice to children, and while scars on my arms and chest Phoenix, AZ, in the fall. it helped, and I’ve caught growing up I made a lot of from surgery, and I figure a I am not afraid to go out up. I will be graduating friends in the motorcycle tattoo is no worse! I tell my into the world and live my from high school this June. industry. mom, “God put me on this life, and I hope I inspire People are pretty nice for I think having CCA’s sup- earth looking different; I any younger kids with the most part, but kids can port while I was growing might as well run with it.” craniofacial difficulties to be mean. I have an older up made a big difference do the same. brother, Erick, and when in my life. I’ve been we were younger, he pro- involved since the start, tected me a lot when peo- and I’ve only missed one ple would stare. But we family retreat. I met other each went to different kids like me, and my whole grade schools and jr. highs, family found out that we ccagrad and by the time I got to aren’t the only ones high school, he had already dealing with craniofacial “God put me on this earth looking different; graduated. I had to learn problems. I might as well run with it.” 3 andrew, from page 1 The doctors struggled to appointments with speech human and that I do have find a “syndrome” that fit therapists and occupational limits. I allow myself to feel Andrew. (They never did. therapists that came to my sorry for a while, cry, and He is totally unique.) home four times a week. I let it all out. It is hard to be Andrew remained on a res- got up all night long to the one making all the pirator for eight days and feed him by g-tube and felt decisions. It is hard to find was unable to eat by lucky to have three or four time to get sick. It is hard mouth. Eventually, Andrew hours of sleep a night. to remain upbeat and posi- began breathing on his During the next few tive when you see your own, and a g-tube was years, things became easi- child in pain. It is hard to placed to feed him. er. Andrew got healthier as ask for help. When I look back on the he got older, and he had Finding CCA three BEFORE: Andrew at 3 months first year of Andrew’s life, I fewer appointments. The years ago was a gift. wonder how I survived. He machines and equipment CCA has been the most was hospitalized until he became part of my life and valuable resource I have was five weeks old, and no longer seemed so over- had in Andrew’s lifetime.