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A Mother's Perspective

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A Mother's Perspective ccaquarterly newsletter of the children’snetwork craniofacial association Cher — honorary chairperson spring 2011 inside cca kid camryn berry . 2 cca adult beth wenger . 3 cca supersib caleb berry . .4 rick’s raffle . 5 calendar of events . 6 craniofacial acceptance message month . .6 from the financial assistance . .6 henry’s march . .7 chairman fresh start . .8 t is an honor to write this testimonial . .12 ias the newly elected chair of the Children’s Craniofacial donors in the spotlight . .12 a mother’s Association Board of good news . .13 perspective Directors . If you’re reading a cca mugshot . 13 CCA newsletter for the first By Lisa Moore links of love . .13 time, my hope is that you will e moved to Tampa when I was 8 months pregnant want to seek a relationship fundraising news . 5,7 & 13 wwith Katie . I was polyhydric (extra amniotic fluid), with CCA and become a part prosthetic devices . 14-15 and they were concerned that her head was measuring of our wonderful family . If charitable ira rollover . .16 larger than her age . At the follow-up ultrasound they you’re a regular reader and also took note of her feet and toes . I knew in my heart already a part of the CCA donor lists . 16-19 something was wrong . Without knowing what we would family, thank you for your 3 cheers for volunteers . .20 be facing at her birth, Tom and I were blessed with an 8 lb continued involvement and 9oz baby girl with Pfeiffer’s syndrome . support . I hope your needs We thought we were very fortunate there was a doctor are being met and that you coming out of the OR who noticed Katie immediately and are motivated to remain a told my husband that she had a craniofacial syndrome . (We vital part of the organization, would later read that some families experience a long period where our vision is a without identifying their child’s syndrome or condition .) He world where all people are said that surgery would correct her head, she would be accepted for who they are, not how they look . see perspective, page 10 empowering and giving hope to individuals and families affected by facial differences see chairman, page 8 in the fall (I Alternative the best . Some turned 15 a few days ago, didn’t get to of my favorite bands are which makes him about this past season TobyMac, Switchfoot, and three and a half years older because of Joel and Janna . Joel and than me . Caleb and I like to surgery) and Janna is the name of my play music together . I sing basketball in cousin’s band . My father and he plays piano . My the winter . I’m plays the guitar for the brother and I also like to looking forward band . It’s great because play outside and ride bikes . to trying track every summer they play at We like to make videos for the first time a Christian music festival of us together having this summer . called Soulfest, and I get a comedic newscast or Any hobbies? to go to see my favorite making silly commercials . I like to write, bands . It’s a lot of fun! paint, draw and I also love to sing and Have you been to a CCA Q&A with read . My favorite am on the worship team retreat? books right at my church . One time I I have been to one camryn berry now are the even sang for a crowd of CCA retreat . It was this Hunger Games hundreds at my school for past summer in Boston, Tell me a little bit about series, the Percy Jackson a concert last year . I sang Massachusetts . All my school. series, the Sisterhood of the song “Castle on a medical care is in Boston, I am in the sixth grade the Traveling Pants series, Cloud” from the Broadway which means it’s normally at Livermore Falls Middle and the Peter and the classic Les Miserables . pretty stressful to be there . School in Livermore Starcatchers series . I love all What are your favorite TV But this time it was so great Falls, Maine . Something these books and read them shows? to go there just to have fun . interesting about my school over and over . I like the shows Victorious It brought a new way of is we are preparing for I love to write and am and iCarly . I also like how I viewed Boston . We consolidation between my currently writing a book repeats of older shows got to go to an aquarium school and the school from called The Falls . It is about like Full House, The Brady and stayed in a humungous the next town over . Next a girl who locks eyes with Bunch and Bewitched . hotel that was beautiful . year, I’ll be going to a new the new boy, but he is school and will meet a lot Any favorite movies? Do you have any advice for trying to avoid her as much kids going through similar of new kids . I am also on I love ALL Disney movies, as possible . Little does she situations? the Student Council, so I old or new . My favorites know that he is part of a Stay positive. Whether get to help organize things . being Mulan, Tangled, secret society along with Pirates of the Caribbean (I it’s staying positive What are your favorite her brother trying to fend can’t wait for the new one about how you see subjects? off evil in the world . to come out), The Princess yourself or about long I like language arts, I also like to paint and the Frog, and the Toy trips, stressful hospital gym, math and art . But I landscapes more than Story series . visits or surgeries, life is probably like gym the most anything else and love so much more enjoyable because I get to let out all Do you have any brothers to draw my own anime when you have a smile my energy! or sisters? characters . Yes, I have one brother on your face! Do you have any after- named Caleb . He just school activities? What kind of music do you like to listen to? I am a member of the I enjoy all types of school newspaper, which music — it’s just a matter meets after school . I also of what’s playing on participate in youth group the radio! But above all, at my church . I play soccer I think I like Christian ccakid 2 strength and courage By Beth Wenger, N. Bethesda, MD ong after the corrective Enduring facial before I entered sixth grade the effort and outcome . lportion of my life was differences and massive I became so determined And some days, even still, behind me, and right in reconstructive surgeries to not be the girl with the I have to remind myself of the middle of trying to from the age of 6 weeks birth defect, regardless of the strength and courage figure out the woman to 22 years gave me how well doctors could I possess—and where it I am supposed to be, I strength and courage . make me look “normal .” I comes from—before I can had a great need to find Through stories written in worked like crazy from that take those big bold steps to someone I could really CCA newsletters, I have time forward to become go after whatever I desire . relate to . I needed to find since found this strength the girl and later the Through all my pursuits, someone who had endured to be quite common woman who “did all this I have learned that having craniofacial defects and among young people and had all that going on .” craniosynostosis will always reconstructive surgeries like who endured the same or The birth defect and the be a part of me . But it I had . So, as any modern similar procedures (and in facial differences would just is, just as I had long ago girl would do, I turned to many cases significantly be a fact of life, a side note hoped, not at all who I am . the Internet . more) . These children— for those who really had to Beth Wenger is Program In my search, I stumbled and probably all children know . Manager for KEEN upon the CCA website . who have craniofacial From that point, defining Greater DC, a nonprofit CCA didn’t exist when differences—have myself as I saw fit became organization providing free I was growing up and incredible grit . my life’s goal . In fact, it recreational opportunities going through most of The grit I developed so has been my only true, to children and young my surgeries (and neither early in life through my deep-in-my-core goal . It adults with disabilities. Beth did the Internet) . Before medical hurdles overflowed has been a goal that has is also a professional writer I discovered this vast into all aspects of my life . It pushed me forward to have and editor with a B.S. in resource, I knew of no has propelled me forward many, many remarkable Psychology and Marketing/ one who had experienced through many challenges and fun adventures and Business Administration anything like I had . For and into many great experiences . from Albright College the first time, I found experiences and rewarding With a no-limits attitude, in Reading, PA, and a that the lonely part of me opportunities . At the same most days it has been easy Publication Specialist so inherently tied to the time, I have always loathed to get up and try and do, Certificate from George medical issues of my past that I was “different,” that win or lose, succeed or fail, Washington University.
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