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Life Is Full of Miracles by Jeannie Ewing Director Retreat Sponsors

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Life Is Full of Miracles by Jeannie Ewing Director Retreat Sponsors THIS ISSUE OF THE CCA NETWORK IS DEDICATED IN MEMORY OF ASHLEY BARCROFT & PHOENIX COLEMAN ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2014: Issue 2 inside cca kid ian bibler . 2 cca adult jessica barbalaci . 3 cca supersib eli bibler . 4 morgan meck’s match play . 5, 14 horseheads, ny . 10 all the way for cca . 11 message testimonial . 12 calendar of events . 12 from the ucf: awareness for program social change . 13 life is full of miracles By Jeannie Ewing director retreat sponsors . 15 wonder t-shirts . 15 arah has always been somewhat of a medical marvel; an you believe the sadie’s night seven the events leading up to and surrounding her cretreat is already over? at the ball park . 18 birth have left many people at the very least speechless Time sure does fly when stormbringer for and more often riveted and enraptured by her little life you are having fun! The stephanie sumpter . 19 that is still unfolding each day . She was born with Apert 24th Annual Cher’s Family craniofacial acceptance syndrome, but, like most parents who have children with Retreat was held in St . Louis, month . 19 varying forms of craniosynostosis, we were oblivious to Missouri June 26th through any sort of red flags concerning her development, at least state assistance . .. 19 29th, and was officially the prenatally . largest retreat to date! more fundraising news . 20 I quickly dismissed the idea of prenatal testing when given One hundred thirteen how to raise funds the opportunity by my family doctor during one of my later families attended from for cca . 21 obstetrics visits, and he never pushed the issue further; 33 states with one family good news . 22-23 that fleeting moment in which I was given a decision that coming from Canada . Of rick’s raffle . 24 could have helped me determine whether or not something the 113 families, 32 families might be wrong with the baby passed without much of were first-time attendees . an afterthought . Beforehand, however, I did consider the Our home for the weekend was the historic St . possibility of genetic testing, but the reason I declined was Louis Union Station Hotel . twofold: one, I am an incessant worrier and knew if the Union Station, the busiest results returned with less-than-stellar news, I would quite train station of its time, was plausibly jeopardize the health of the baby by my fretting, and built in the 1890s and still see sarah, page 16 see program empowering and giving hope to individuals and families affected by facial differences director, page 6 ccakid ight-year-old Ian he has been doing for the eBibler is having one last three years . Right now fantastic summer . The he’s a blue belt . He has soon-to-be third-grader has also played lacrosse for gone to camp at a local the past two years . During high school, visited his the summer, however, aunt and uncle in Baltimore you can catch Ian and his for a week and has made older brother, Eli, duking it to the neighborhood it out with water balloons . water park a few times to (In fact, right before he whoosh down his favorite was about to interviewed, water slides . He’d done all Ian and his brother were this by mid-July (the time of right in the middle of a his interview), so he’s been particularly spirited water- quite a busy guy . And, oh balloon skirmish .) yes, he got to see not one, Ian’s all-time favorite but two fireworks displays movie is The Hobbit, with on the Fourth of July! Frodo being his favorite Another favorite thing character . He likes the TV Ian likes to do is collect show “American Ninja seashells . Good thing he Warrior,” and he’s a big lives near Ponte Vedra fan of rapper TobyMac . He Beach in northeast Florida, has a dog named Casey, a home to some of the most four-year-old Shih Tzu mix, gorgeous—and seashell- who weighs in at just 13 rich—beaches around . pounds . This fall, Ian will be Ian has Treacher Collins, going to a new elementary syndrome and when school, as his school district strangers ask about his meet ian bibler rezoned . Many of the same face, he politely tells them neighborhood friends will everybody is different and be going with him to the he was born this way . He new school, too . Ian is doesn’t worry going into looking forward to getting a surgery or a procedure . back to science class—his “Stay calm,” he says, favorite subject . “because God is always After school, Ian takes with you . karate classes, something 2 meet jessica barbalaci i, my name is Jessica best and gotten through h Barbalaci, and I’m 20 it . One big achievement years old . I live in Trenton, I have accomplished was New Jersey, with my graduating high school . parents, Bette and CJ, and I attended Conwell-Egan my older brother, Michael . Catholic High School in I have a dog named Kasper Fairless Hills, Pennsylvania . and a cat named Little I’ve done a lot of things Rascal, who are both while I was in high school . rescue animals . I was in the school choir I was born with a cleft lip and drama club, and I was and palate . I’ve had seven on homecoming court my surgeries, the first one senior year . Although it when I was three months may have been tough at old . I just had another times, I did have a lot of one in July, hopefully fun . my last one . I don’t like Now I am off to surgeries very much, but college at Mercer County with my amazing doctors Community College in New at Children’s Hospital of Jersey, where I’ll study to friends from many different see that we are all just Philadelphia I always come become a Special Education places, and it is always so normal kids who like to do out looking great . They teacher . I know it will be much fun . normal-kid things, even have done so much for challenging, but I am ready Another thing that has though we might look a me, and I am so grateful to for it . I am very excited to been cool is I got to meet little different . It has been a them . start a new chapter in my Lentil the French bulldog great experience for me . One thing I have always life . puppy who was also born I hope you liked getting struggled with is school; Some things I like to do with a cleft lip and palate . to know me a little better . I have always tried my when I am not in school are He is so sweet and one I’ve had a pretty tough singing, dancing, acting, of the coolest dogs ever . life so far, but I’m a pretty going to Philadelphia Plus his mom Lindsay tough girl . And I’m excited Phillies games, watching Condefer is pretty cool, to see what the future hockey with my family too . Lindsay and Lentil even holds for me . and going to see one of came to retreat with us last my favorite singers, John year . That was a lot of fun . Eddie . I also really love I have also been involved going to CCA retreats every with being a “Wonder summer . I have made many Kid” (along with my friends Danny and Connor) and going to different middle schools in New Jersey, talking about the book ccagrad Wonder and helping kids 3 meet eli bibler Living with Treacher Collins syndrome ould you be scared The main problem of wif you were born Treacher Collins is a lack with a birth defect? Would of bones in one’s face . you be sad if people When his face was being stared at you when you go formed his treacle cells places? What if it was your stopped reproducing, so face that made you look the bone in his ears, eyes, different from everyone cheekbones and jaw didn’t else? Well, this is what it’s fully develop . like for my little brother, The physical features of Ian . Treacher Collins include Ian was born with downward-slanting eyes, Treacher Collins syndrome a smaller lower jaw, lack eight years ago . Treacher of eyelids, high palate, Collins syndrome is a facial malformed ears and amazing surgeon . This and pointing at Ian’s face . birth defect so rare that conductive hearing loss . smart and talented doctor Sometimes they even say it is found in only one The eyes are often referred has helped regrow and rude and mean things to out of 50,000 babies . In to as “sad eyes .” The form my brother’s jaw two him . When I read the book, Maryland, where we were small jaw meant he could times already in his short Wonder, I knew just how born, there were only not breathe well enough life . With these surgeries, Auggie’s big sister, Via, three other children with on his own, nor could he Ian is in extreme pain, felt . Yet, I realized how sad Treacher Collins in the eat on his own . And since needs a feeding tube to and frustrating it was for entire state . The hospital Ian’s ears are really only eat, and has lots of swelling Auggie too . pediatrician actually had little lobes he is considered which takes weeks to go When you have a family to Google Ian’s symptoms profoundly hearing down . Remember, Ian is member with a birth defect after he was delivered .
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