Brenna's Story
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ccanewsletter of the children’s craniofacialnetwork association Cher — honorary chairperson summer 2005 inside cca teen brittany stevens. 2 cca grad tiffany kerchner. 3 cca supersib message lauren trevino . 4 from the chairman 2005 retreat recap . 5-7 Brenna Johnston n the spring issue of the fundraising news. 8 inewsletter Tim Ayers brenna’s story announced that he was cca programs . 11 by Robyn Johnston stepping down as calendar of events. 11 Chairman of the CCA Board of Directors. He has early a decade ago, my husband Erin and I discovered provided countless hours of prosthetic ears . 12 nwe would soon be parents. Like all parents, we his personal time to our wanted to raise a child that was happy, healthy and well mission and we will miss nacc recap . 13 adjusted. On May 14, 1996, Brenna, the first of our three him as Chairman. children, entered the world. She instantly was my little Tim is not going far as he 3 cheers . 14 Sugarplum, such a sweet baby! will still be on the Board of Her journey has not been easy, but you would never Directors. He is especially pete’s scramble . 16 know it meeting her today. She knows that she’s a typical committed to leading our kid who just happens to have been born with head and advocacy efforts to get facial bones too small to function properly, and we try to health insurance companies 2006 Retreat Info keep her life as balanced as possible. Here’s the typical to cover craniofacial part: Her favorite food is catsup, with hotdogs and ham- The 16th Annual Cher’s surgeries that today are burgers, no buns. The not-so-typical part: She had nearly Family Retreat will be at classified as cosmetic or 40 surgeries before she was eight years old. She was born denied for other reasons. the Hershey Lodge in with Crouzons Acanthosis Nigricans, a rare variation of We know only too well Hershey, PA, on June 22–25. Crouzons Syndrome. that is not right. Tim, on For more information, Brenna has taught us so much in nine years, more than behalf of your colleagues most people learn in a lifetime. She was born with a contact Annie Reeves on the board and CCA strong will and something to teach the world. Over the at 800-535-3643 or friends – Thank you for [email protected]. see brenna, page 9 see chair, page 15 empowering and giving hope to facially disfigured individuals and their families ccateen meet brittany stevens ourteen-year-old began a bear collection, fBrittany Stevens, an which, from what CCA has outgoing girl from been told, is now quite Philadelphia, PA, is this extensive. issue’s featured CCA Teen. Brittany and her family She was born with Nager heard about CCA through Syndrome, a craniofacial a contact at Children’s Brittany Stevens condition that affects her Hospital in Philadelphia. learning ability, breathing, Since they have been a part eating, speech and hearing. of CCA, they’ve been to She has had 14 surgeries so quite a few retreats — far and has another one Atlanta, GA, where she had pick of the litter scheduled for this summer. the opportunity to meet Brittany begins 10th Cher; Tempe, AZ; grade this fall. When at Washington, DC; St. Louis, hanks to all of the following CCA Families and school, she learns to count MO and this summer’s t Friends for recycling “litter”… collections of and build on her vocabu- retreat in Nashville, TN. discarded cell phones and empty computer and laser lary. She also loves to color. Despite her physical and disk ink cartridges go for rebate points which have Another activity at school is mental challenges, Brittany translated into over $500 so far for our cause! her life skills support class, remains upbeat, strives to where she learns how to do everything everyone else CCA Funding Factory Participants cook, do laundry and take does and has a great sense Lee Ann Adams Annie Reeves public transportation. of humor. When you see Tim Ayers Rose & Fred Seitz Outside of school, her give the thumbs-up Brittany likes shopping, sign, she’s telling you, Shirley Baptist Shelley Shields listening to music, seeing “Good job, baby!” Covenant Medical Group Amy Shackleton as many movies as she can Kristine Dale Bill Sims and keeping up with the Tony Davis, DDS Eberhard Struss latest fashion trends. Jill Gorecki Robert Vargas Brittany also collects but- terflies and hearts, two of Donna Gossett Amber White her favorite things. And Heather Lermont-Pape Robin Williamson since she was a baby, she Alexis Menz Stephen Wright Dan Paulson Wendy Zastrow 2 tiffany tells it like it is y name is Tiffany time. I used to get so I've always been told that if mKerchner. I'm 16 upset, so I had some plastic I ever get made fun of, I years old and live in surgery done. I had eight should just smile at them. Pennsylvania in a small surgeries total and don't And I do. They hate that! town called Fleetwood. I regret any of them. Now, I I have many hobbies. My Tiffany Kerchner attend Fleetwood High can smile, and that's all main interest is music — School, where I’ll begin that matters. anything relating to music. become an elementary 11th grade this fall. The kids at school have I started taking singing les- school music teacher. When I was four years matured, and they don't sons when I was seven and In 1999, Diana Sweeney old, I was diagnosed with bother me anymore. have loved singing ever told my mother and me Moebius Syndrome, a rare Actually, I've made so since. I also love playing about CCA, and we’ve birth defect caused by the many friends. Still, there instruments — piano, bells, gone to every retreat since absence of the sixth and are a few people that will xylophone, guitar, chimes then. I used to think I had seventh facial nerves. say some rude comments, and the vibes. I love it so bad having all these When I was younger, the but I don't let them get to Broadway plays and acting. surgeries, but when you kids at school picked on me. My real friends love I've been in a couple of get there and look into the me and teased me all the me for the person I am. plays, including The Sound eyes of some of the little of Music. kids, you know they've I love ice hockey, and I been through so much have season tickets for my more than you. It makes favorite local team. you not want to feel even Football, baseball and the least bit sorry for NASCAR are also some of yourself. my other favorite sports. I'm very glad that I have After I graduate from the opportunity to attend high school, I plan to go to the retreats. Through CCA, college and study music. I’ve made many friends Since I love music, children and have so many good and teaching, my goal is to memories. ccagrad 3 ccasupersib being gavin’s sister y name is Lauren tournament. Gavin plays mTrevino. My par- on a soccer team, too. ents are Tricia and Ruben I’m in the enrichment Trevino, and my brother is program at school, which I Gavin. really like, and get straight It is hard to be Gavin’s sis- A’s and S’s. I like to read all ter. Gavin has a trach and a of the Harry Potter books, hearing aid. Sometimes mysteries and Lizzie when we go places people McGuire books. Gavin does stare at Gavin and me, and well at school, too. it makes me feel uncom- It’s fun to have Gavin as fortable. a brother because he is When my parents first funny and energetic. But told me that Gavin was like a lot of brothers, Gavin getting a trach, I was nerv- can sometimes be a pest. I ous and scared. I didn’t love him all the same, want Gavin to get hurt, though! but it had to be done. Over the years Gavin has Lauren Trevino had four more surgeries. There were two main surgeries, not including denim days the trach. Each time I was scared and nervous, but all of our prayers seemed helley Shields of Lubbock, Texas has been busy raising money for CCA. to work. SShelley, along with Deanna Moran and the entire staff at the Central Billing We play soccer and we sometimes play baseball Office for Covenant Medical Group, put together a Denim Days Fundraiser with with our dad. Gavin can hit all proceeds benefiting CCA. During a Denim Day, employees donate to dress the ball far. I am in the developmen- down for a day, wearing jeans or casual dress not otherwise allowed under their tal soccer program for East company dress code. It’s a great way to raise funds! Not only did they raise Orange, a more difficult league. We won our last $122…they also collected 17 cell phones. A big THANK YOU goes out to all who participated at Covenant Medical Group! 4 2005 retreat recap Instead of the usual write-up, the kids — from the entertain- folks at CCA would like to give you ment and activities to the a family’s perspective of the food that was served and retreat. Here’s a letter from the gifts that were generously Dankelsons, who just came back from this summer’s retreat in given.