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Daniel's Story H H H H H H H 20 Years of Giving Hope 1989-2009 cnewslettecr of the ca hildren’s cranetwniofacial association Cher — honoorary chair rpersokn fall 2009 inside cca kid ashley bock . 2 cca teen connor bolton . 3 cca supersibs christopher & jessica bock . 4 calendar of events . 5 cca mugshot . 5 cca bracelets for sale . 5 message cca is 20 years old . 6 from the donor in the spotlight . 7 daniel’s story development national inclusion project . 8 By Debby Lloyd director wendelyn’s course of dreams tournament . 9 ur journey with Daniel began when my 20-week remember a fundraiser lemonade for sale . 11 oultrasound revealed a large, solid, cystic-looking iwe did when I was a kids klub . 11 structure attached to the right side of his cheek/jaw. After youngster. Each of us went two ultrasounds and a MRI were inconclusive, we sought a door to door around our fundraising news . 12-13 second opinion. That was also inconclusive as to whether neighborhoods, asking one cca wish list . 13 we were seeing a teratoma or a cystic hygroma. household to donate a During the rest of my pregnancy, I had sonograms about single egg and the next to heroes4hope gala . 15 every two weeks. A genetic counselor asked numerous purchase the egg for a testimonial . 16 times if we wanted to abort the pregnancy. Of course we quarter, alternating until we met our goal or ran out of craniofacial acceptance declined. This baby is a gift from God, and we will love month . 17 him no matter what challenges neighbors. The idea had come with him. varying success, depending financial assistance . 17 In the womb, Daniel’s cystic on how outgoing we kids more fundraising . 18-19 hygroma was measuring 1 cm. were and how well neighbors knew and trusted 3 cheers . larger than his head. Daniel was 20 us. But, any success at all given an 80% chance of dying was crucial to that first before birth. He had fluid around contribution of an egg, even his heart and at this point, we still if you had to get it from see daniel , page 10 see development director , page 14 empowering and giving hope to individuals and families affected by facial differences meet ashley bock ive-year-old Ashley (Topher), who is eight years Wolf Lodge. “I had so fBock is making the big old. Her family has two much fun,” she said. “I leap to Kindergarten. She’s dogs, Codi, an Alaskan loved seeing and playing transitioning to a malamute who was with other kids like me.” Kindergarten class in the rescued from a shelter, and Ashley met up with her “And they put stickers all mornings and loves it, a sheltie named Sadie. Her friend Olivia Sanborn and over your chest and tummy especially because she can brother has two dwarf Olivia’s sister, Amelia. Plus and a pulse ox and IV.” Her buy her own lunch. hamsters, Daisy and she saw so many other next procedure will be the Outside of school, Ashley Minnie. “I love to talk to CCA friends, including mid-face. enjoys riding horses. She’s them and watch them run Kieran, Seth, Brody, Ashley, Always the optimist, started a horseback-riding on their wheel,” she said. Antonio and Alexis, just to Ashley takes everything in therapy program last She had a busy summer. name a few. She also met stride: “You get to eat January and looks forward Ashley went on a trip to plenty of new friends, too. popsicles and ice cream to riding Buddy, her San Antonio and then Ashley has been to four and play doctor with your favorite horse in the stable. attended a “bunch of retreats so far—Grapevine, bear. And they have a She also likes to dance to therapy camps” at the TX; Nashville, TN; Hershey, playroom.” all types of music and is a same place where she rides PA; and Salt Lake City, When she grows up, huge Hannah Montana Buddy. UT—and she looks forward Ashley wants to be a fan. And when it comes to This last summer, Ashley to going to more. doctor, so she can take playtime, playing with her and her family also went to Ashley has Apert care of “surgery kids.” dollhouse is her favorite the CCA retreat at Great Syndrome and has had 17 way to pass the time. surgeries so far. “Sometimes Ashley has a twin sister, after surgery your tummy Jessica , and an older won’t feel good,” she said. brother Christopher 2 cca kid cca teen meet connor bolton y name is Connor The doctors put a trach in At that time, I was blessed to one day work in a mRay Bolton . I was when I was just a month with a little sister named museum. born September 12, 1993, old. They put a G-tube in, Molly. Later in first grade, I When I am not doing in Albuquerque, New since I had a severe cleft got the G-tube out. I still homework, I enjoy playing Mexico. I was born at 32 palate and wasn’t able to struggled with eating for with my Wii and reading weeks. Right away, I was suck a bottle. sometime after that. I am all the WWI and WWII diagnosed with Treacher I finally came home just currently 16 years old, and I books that I can get my Collins Syndrome. I spent before Thanksgiving. My have had as many surgeries hands on. I enjoy drawing the next two and half parents were ecstatic to bring as my age now. all kinds of animals in my months in the NICU with me home. I was sick a lot I enjoy eating all the same spare time. I also enjoy many complications. My when I was little, and I didn’t food my family eats. spending time with my airway was the main issue want to learn how to eat. Through the years, I got ears sister. that had to be dealt with. My parents moved us to through reconstructive When I think back on my Plano, Texas, when I was surgery and a bone- life, I feel blessed to have three years old, where I had anchored hearing aid my family with me every many surgeries in my young (BAHA), and I am now in step of the way. I know my life. My parents found my the middle of braces. future will be bright doctor in Dallas, Texas, Dr. By the time you read this, I because I learned to work Salyer. Since his retirement, I will have started high hard and never stopped now see Dr. David Genecov. school. I am studying for my believing in myself. But I had jaw distraction driving permit and enjoy all most of all, I just keep surgeries, so I could get the my classes especially, history remembering that God trach out. I finally got the and science. My goal is to made me who I am. trach out just before I go to college and study started kindergarten. history and eventually get my Ph.D. in history. I’d like 3 meet christopher and jessica bock By Lisa Bock football for two years and therefore do most of the will start tackle football this fighting in our house. fall. On the weekends, he She loves her sister lets his parents sleep in by Ashley. They play really well feeding his sisters breakfast together with only the (cereal and milk) and occasional disagreement. watching cartoons with Jessica and Ashley both them. know their ABCs, can count to 20, know their address and telephone number, and can spell their names. Jessica is five years old and will be doing a “learn a lot” kindergarten Christopher They still have a very program this fall. This will special bond. Sometimes I be her third year at the hristopher is eight bring him to Dallas with preschool, and she loves it cyears old and will be in Ashley and me so he can there. She will also be in second grade this fall. He see what takes place when her third year of tap and was two weeks away from we are there for ballet classes. She loves to turning three years old appointments. He also dance, play dress up, play when his twin sisters were does a great job of helping with her dollhouse and born. me with her and keeping watch the movie Ashley came home from her entertained. “Cinderella.” Jessica also the hospital first, and Christopher loves race plans to play soccer at the Christopher immediately cars and trucks. Since he YMCA this fall. bonded with her. He would was two years old his Dad She will be going to just lie on the couch and has taken him to NHRA school until 1 p.m. every hold her while she slept. A drag races every year as Jessica day while her sister and few days later, Jessica came well as monster truck brother will be at school home and Christopher shows. He has a small- essica is Ashley’s twin until almost 4. So this year wanted to know why engine go-cart at his jsister. She is super sweet Jessica gets to make up all Jessica’s head looked the grandfather’s farm that he and gives the best hugs the time she missed out on way it did. He had gotten loves to drive on the to everyone she knows. with Mommy when she so use to the way Ashley weekends.
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