ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2018: Issue 2 inside cca kid aaron kimberlin . 2 cca supersib aiden kimberlin . 3 cca adult megan brown . 4 garden tour & tips . 5 morgan meck’s match play . .6 retreat recap first-time attendee . .14 pep recap . 16 very year, I hear, “This eli potter: good news . .18 ewas the best Retreat yet!” I am not sure how wonderkid speaker that can be possible, but training . 19 somehow I feel that way miles for cca kids . 19 too! The 28th Annual delaney’s fishing trip . 22 Family Retreat & madison peck, bella’s journey, Educational Symposium then & now . .24 was held in Salt Lake City, UT, June 28th-July 1st, dale family is a wonder 26 my resolve By Eve Fuentes and was by far, our largest hailey’s fan club . 28 retreat to date, with 160 y husband and I were prepared for our daughter to retreat raffle . 29 families—representing have some type of medical issue, but were not fully m 168 individuals and 1 dog testimonial . .30 prepared for the diagnosis . We knew she had a type of with facial differences— calendar of events . 30 Craniosynostosis through the numerous ultrasounds prior from 33 states, plus to her arrival, but even the doctors were shocked with the sponsors & volunteers . 31 Australia, Canada, and the syndactyly of her fingers and toes when she was born . 3 cheers for volunteers . 32 United Kingdom . Of the 160 Once we were both discharged from the hospital with families, 55 families were laundry lists of her conditions, despite my knowing better, I first-time attendees . searched the internet . With such a large group, My heart sank . we took over the scenic All I felt was that my little girl’s future was going to be Little America Hotel . filled with surgeries and worse, the unknown . To add fuel The hotel provided us to the fire, a family relative (a former Special Education gorgeous accommodations Assistant at that!) told me that Bella would be wheelchair- conveniently next to the see bella, page 20 see retreat recap, empowering and giving hope to individuals and families affected by facial differences page 8 meet aaron kimberlin yet Aaron knew it was time After several tests, Aaron back like a champ, usually to be born . He knew he was diagnosed with a faster than doctors say, and needed a little help . congenital heart defect . surprising everyone with his Aaron was born at He had two holes in his resilience and strength . His 35 weeks . Araceli and heart, and a valve that zest for life is contagious . Matthew held their breath needed to be repaired . Aaron’s favorite activities until he gave his first After about six months include dancing and breath, as the doctors had of rigorous feeding and wrestling with his brother . warned them his lungs medication schedules at He has inspired so many may have not yet been fully home, doctors determined with his story already, and developed . Apart from a Aaron needed to undergo will continue to make a couple of bruises from the open-heart surgery . Up difference as he grows delivery, Aaron looked and until this point, the heart older . seemed like a healthy, and condition seemed like an fully developed, baby boy . isolated medical condition . He followed mom to her It was right before the first hospital recovery room, surgery when suggestions aron Riley Kimberlin and posed for a thousand pointed out that Aaron ahas always been a pictures with grandparents, may have been born bundle of surprises . But his aunts, and cousins . with Crouzon surprises make him one of However, his blood sugar syndrome, just the most incredible, unique levels skyrocketed all night like his mom . and interesting kids on the long . The next day, Aaron Blood tests planet . was whisked off to the revealed it He celebrated his third hospital NICU unit where to be true . birthday on June 30 with he would spend the next Aaron cake and donuts (he has a 29 days of his life . The underwent tremendous sweet tooth), NICU was an emotional his first opening Incredibles toys roller coaster for everyone major (that’s his favorite movie) involved . Some days, his surgery in and blowing bubbles parents would go home February 2016, outside . It’s amazing to from spending the day at and has since had think how far he has come the hospital, and Aaron three others including in three short years of life . would be thriving in his a cranial vault, and two to In June 2015, his parents, blood sugar levels and fix hydrocephalus . Every Araceli and Matthew, temperature; they would single surgery he has gone along with older brother come back the next day to through, he has bounced Aiden, were quite find out those levels had surprised when he decided plummeted throughout the he was ready to meet the night . Doctors and nurses world . No hospital bag had couldn’t quite figure out been packed, no maternity what was going on with pictures had been taken, Aaron until day 10 . ccakid 2 ccasupersib meet aiden kimberlin uper Sib Aiden in the middle of the living sMatthew Kimberlin room . has a smile that can light Aiden’s heart and loyalty up any room . He lives to toward his brother is entertain, whether telling unrivaled . Even though jokes, or being the center Aiden has had to walk of attention . He loves through four major to bring joy to the ones surgeries with Aaron so closest to him, and to far, he has not let the people he meets . changes in situations bring Aiden is seven years old, him down in any way . He time in the NICU, Aiden camping, learning about and is entering the second always helps with surgery would put stickers on the safety and survival grade in August . He excels prep, keeps his mom tops of Aaron’s bottles so skills, and helping the in every subject in school, and dad calm during the his mom could take them community . Recently, he and is enrolled in a dual- surgery and recovery time, to the hospital . When was promoted from Tiger language program . He visits his brother in the Aaron came home from Cub Scout to Wolf Scout . has been learning how hospital, and makes sure he the hospital, Aiden loved Some of Aiden’s favorite to speak, read and write has everything he needs . to cuddle with his brother, activities include playing in English and Spanish From the time Aaron and always exhibited a video games on the Wii since Kindergarten . Even was born, Aiden has been gentle heart toward the and iPad, and collecting though he succeeds in all helping mom with his little new family member . toys, such as bobble heads his subjects, his favorite is brother . When Aaron spent This and McDonald’s Happy Math . Super Sib Meal prizes . After working He adores his younger joined hard at school all day, brother, Aaron . Even Boy Aiden loves to relax by though there is a four-year Scouts watching his favorite TV age gap between the two, about a shows, like Duck Tales, or that hasn’t stopped Aiden year ago . tuning in with his younger from opening his heart and He has brother to watch anything making his little brother thrived in on Disney Jr . his best friend . You can his pack often find the two brothers Join the Kimberlin family earning wrestling or holding an August 16 in Dallas for badges, impromptu dance party Family Night Out! 3 meet megan brown ccaadult Life Is an Adventure! rom my earliest memories, I have always been on fadventures . Whether it was to the hospital to have surgeries, or travel throughout the United States to visit relatives . I was born with a benign tumor called a hemangioma . When I was a baby, doctors tried different treatments to stop the tumor from growing on my face . Finally, it was an experimental drug, at that time, that saved my life . The tumor faded away due to the drug, but the next step in my craniofacial journey was to have 21 surgeries throughout my childhood . Despite having that many surgeries, I still had a pretty fun childhood . I am the youngest of four kids . I have two older brothers and a twin sister . My twin sister was not born with a facial difference but has been a built-in friend and protector for me throughout my life . I have always looked up to my three older siblings, and wanted to do the sports and hobbies they did . Since I was 5 years old, I have played many sports . When I was a kid, soccer was my favorite to play, but now as an adult I love running long distance and shooting hoops . Two years ago, I ran my first half- marathon . The life skills and drive I learned from my siblings and playing sports have carried me in other areas of my life . In August 2017, I took a bold step . I offered teachers via Facebook, whose classes were reading Wonder, that they could Skype me, a real-life Auggie, free of charge . The response from it has been nothing short of incredible! As of right now, I have shared my story more than 180 times across all 50 United States, plus 12 other countries across five continents . One thing I have learned from this experience is that when we focus on the similarities, more than the differences, life is more enjoyable and better for everyone . I truly believe God has made me this way for a reason, and through Him I have been able to turn my pain into purpose .