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. In the past, he She and Christopher have was in Dallas for Ashley’s looked he actually thought has played soccer and like personalities and surgeries and doctor something was wrong with baseball, but he really loves appointments. They are Jessica. football. He has played flag really looking forward to cca supersibs some quality time. 4 calendar of events h&r block date event contact Dec 5, 2009 CCA Holiday Party –Midwest [email protected] f you’re not already a customer of the H&R Block folks Brat Stop/Parkway Château 214.570.9099 ifor your taxes, having your return done for 2009 with Kenosha, WI 800.535.3643 Dec 12, 2009 CCA Holiday Party –Dallas [email protected] their help will also help CCA! 10 AM-Noon Southfork Ranch 214.570.9099 H&R Block will donate $25 to Children’s Craniofacial Parker, TX 800.535.3643 Association if you designate CCA as your charity when you Mar 7, 2010 3rd Annual Henry’s March [email protected] for CCA 5k Fun Run myspace.com/henrysmarch have your taxes done there! Call Jill at CCA for a form. CSU, Stanislaus 209.664.0500 Turlock, CA Jun 24, 2010 Craniofacial Symposium [email protected] Hyatt Regency Cambridge 214.570.9099 bracelet sales continue! Cambridge, MA (overlooking Boston) 800.535.3643 Jun 24, 2010 20th Annual Cher’s [email protected] Family Retreat 214.570.9099 Hyatt Regency Cambridge 800.535.3643 Cambridge, MA (overlooking Boston) Aug 28, 2010 5th Annual Wendelyn’s Course [email protected] of Dreams Golf Tournament Country Club of Arkansas Maumelle, AR Sep 2010 Jylian’s Links of Love [email protected] Golf Tournament www.ccakids.org Location TBA (Texas) 800.535.3643 Sep 19, 2010 Smiling Thru the Mask – [email protected] A dinner to benefit CCA “Beyond the Face is a Heart” wristbands Restaurant 1620 Little Rock, AR The response to our CCA bracelets is so enormous, Sep 25, 2010 Little Fire, Big Heart [email protected] we’ll continue selling them throughout the year! Dinner/Auction www.littlefirebigheart.com Melwood Art Center Bracelets are $1 each Louisville, KY

They’ll make a great stocking stuffer! cca mugshots Available in the 5 colors of CCA’s logo faces: royal, orange, teal, purple, lime Sizes: 8” (universal/adult) and 7” (small/child) To purchase and/or sell, email or call Jill [email protected] • 800.535.3643

become cca’s “friend” on facebook!

CA now has its own facebook page and cause! cYou can look us up by simply searching for CCA supporters, Richie Cook and Adam Golden got their “girls” Presley and Paisley to “mug” for CCA. Children’s Craniofacial Association! 5 H H H happy 20 years! H H H H

o many changes have offering a toll-free hotline CCA last year. Rob Gorecki staken place over the and a financial assistance has been involved in past 20 years. In 1989, It program as well as motorcycle-related was as difficult for CCA to publishing a newsletter. By 20 Years of Giving Hope fundraising activities over find families affected by fall 1992, a new logo was 1989-2009 the past seven years and facial differences as it was created, and the first has represented CCA at for them to find CCA. syndrome booklet, “A many events, and his mom, Later, articles in Redbook , Guide to Understanding Jill Patterson, is CCA’s People and Parade Craniosynostosis,” was Craniofacial Acceptance Development Director. magazines helped published in an easy-to- Month that included Jennifer and her mom, tremendously, but CCA still read format. A parent governors’ proclamations Carolyn have volunteered mostly relied on word of support program was in in 19 states, distributing for CCA over the years. mouth to lead families to the planning stages, and hundreds of packets to Dan’s mom, Diana, is a our toll-free hotline. CCA held the second media outlets and holding former board member and Another important issue annual family retreat. observance picnics across currently serves on the for families was finding Fast forward 20 years the country. And in June, financial assistance quality medical care for and you’ll find families CCA held its 19th Annual committee. their children. At that time easily finding CCA via the Family Retreat (the most So for 20 years, CCA has there were few qualified Internet and getting attended ever) and, in been there for families craniofacial centers, and, education and support conjunction with the navigating this unfamiliar unless the family contacted through our comprehensive retreat, re-established our territory. We have listened CCA, the odds of finding website CCAKids.org . CCA educational symposium. to our families, addressed those centers were slim. has published 13 syndrome For 20 years CCA has their needs, and defined Another major issue was booklets and translated served families affected by and refined the programs knowledge about the them to Spanish and now facial differences and has and services we offer. conditions. In order to publishes a much more helped raise a whole As our 20th anniversary educate themselves about comprehensive quarterly generation of “kids.” In year comes to an end, craniofacial disorders and newsletter. 1990 ten families met in Children’s Craniofacial treatments, families had to CCA continues to offer a Washington, DC, to testify Association is proud to be resort to complicated financial assistance program in front of the House recognized as the premier medical publications. for food, travel and lodging, Budget Committee. Of that craniofacial family support Without CCA, families maintains a list of the group Rob Gorecki, Erin organization based on were “out there” on their International Society of Williams and Zach offering the most own. The only time they Craniomaxillofacial Bordonaro, were just comprehensive programs could talk to another surgeons to ensure families toddlers, Jennifer Johnson and services, addressing family going through find comprehensive quality was around 10 and Dan the broad range of similar experiences was in surgical care. In 2008, Kids Sweeney and Stephen medical, financial, the confines of a hospital Klubs were formed to Wright were in their teens. emotional, psychosocial setting, where most of educate and support kids of Today all of these and educational issues their time was spent all school ages, and individuals and/or their related to facial differences. concentrating on their own Webinars were added to families are still involved And we will continue to be child, leaving little time for the stable of programs and with CCA in one way or a source of empowerment commiserating. services, providing yet another. In fact, Stephen and hope for our families CCA was founded in another source of education Wright serves on CCA’s for as long as our services February 1989 and began and support. Board of Directors. Erin are needed. serving families affected by In September, 2009 CCA Williams was awarded a craniofacial differences, observed the Fifth Annual very generous grant for 6 cca 20th anniversary goodsearch & goodshop t-shirts very time you shop online at your favorite stores you could be saving money and earning a donation for H e H H H ur limited edition H H Children’s Craniofacial Association. H o20th Anniversary Our new toolbar, developed by GoodSearch & Logo T-shirts are still GoodShop takes just a few seconds to download. More available for purchase at than 1,300 top stores including Apple , Best Buy , Gap , $20 each plus $5 priority PetSmart , and Staples are pitching in and will donate a percentage of each sale to our organization. There's no shipping (more than one 20 Years of Giving Hope shirt, actual shipping- 1989-2009 extra cost to you and you may even save money as the weight charges will be merchants are providing us thousands of money-saving coupons! quoted). Or one T-shirt is The GoodSearch toolbar also includes a search box free, upon request, with a single donation of $100 or which is powered by Yahoo! Each time you search the more. web, about a penny is donated to us! Initial production of the special celebrative shirts comes There's no easier way to help CCA. Please spread the in Adult sizes, S, M, L, XL, 2XL, and 3XL. And we’re word! Here's a link to the toolbar for more information: happy to announce youth sizes are now available: http://www.goodsearch.com/toolbar/childrens-craniofacial- XS (2-4), S (6-8), M (10-12), (L youth, order S adult). association-cca donor in the spotlight

JR Pag with Johnny “JR” Pagnini , Rob Gorecki jknown as Johnny Pag , Johnny Pag Motorcycles and the CCA Kid Pagnini family have been Jeremy Dale CCA for raffle, the winner sits on the long time supporters of of which will be drawn NY Yankee December 1st. Children’s Children’s Craniofacial bike donated Association. They have by JR Pag for Craniofacial Association is known CCA kid (now the 2009 proud and extremely gala. grown) Robbie Gorecki grateful to be among the for years and Rob’s first beneficiaries of JPM motorcycle was a Johnny generosity. Pag original. Sincere thanks to JR Most recently, Johnny September this year, JR and past at the event to Pagnini “Johnny Pag,” our donated the bike on CCA’s customized his Barhog bring $29,000 during the Fall 2009 “Donor in the behalf for the 7th Annual model into a one-of-a-kind live auction. Spotlight.” Heroes4Hope Gala hosted Yankee’s edition with a ball Johnny Pag Motorcycles by the Jorge Posada signed by Jorge Posada is dedicated to helping Foundation. The bike was embedded in the gas tank, many charities raise autographed by Jorge and the foundation logo funds and has a goal to his fellow Yankees and emblazoned into the reach $500,000 for his auctioned last year for leather seat and again, stable of causes. To that around $30,000! For the autographed in person by end, Johnny has also 8th Annual Gala in Yankees players current donated another bike to www.johnnypag.com 7 the national inclusion project

he National Inclusion working with a “Who’s t Project grew out of the who” list of youth relationship between Clay organizations – YMCAs, Aiken and Diane Bubel Best Buddies International, and Diane’s then 13-year- Boys & Girls Clubs, old son, Mike who had CampFire USA, 4H, the DFWBid founder, Sanj, presents a check to CCA been diagnosed with ARC – as well as many these programs, and it autism. The bond between other local parks and provides funding so the “gives back” them grew strong as they recreation departments, youth organizations can shared a vision of a world community centers, and offer scholarships for program where children like Mike privately-run programs. children to participate. could be fully immersed in They have also formed The National Inclusion FWbid.com has gained society. They had both partnerships with Johns Project has worked with dnational exposure for its witnessed children with Hopkins University’s hundreds of programs, disabilities repeatedly National Center for trained numerous staff revolutionary approach to turned away from activities Summer Learning, the members and leaders, and auctioning off gift cards for open to typical children. University of provided inclusive pennies on the dollar . Both Diane and Clay Massachusetts-Boston’s opportunities for over realized that an organized Center for Social 20,000 children. CCA’s Now, DFWBid.com “Gives effort could encourage and Development and hope is that our parents Back” and you can help. facilitate community Education, the University of will reach out to their local Friday – Sunday, inclusion and empower- New Hampshire’s Institute youth organizations to December 18th – 20th , ment of individuals with on Disability, the University explore a partnership with disabilities. of Minnesota’s Institute on The National Inclusion DFWBid.com will give a While many people Community Integration, Project to provide portion of every auction dream of an opportunity to and the University of North programming that not only entry and final auction assist children with Carolina-Chapel Hill’s Frank welcomes children with disabilities, very few have Porter Graham Child craniofacial differences, but price to CCA . the opportunity to do so. Development Center. all children who need to be Grab a bargain and know As Clay Aiken became a In 2008, both of the embraced by their peers you are also contributing household name through Project’s cutting edge and the community. to your favorite cause! American Idol, he and inclusion models – Let’s The National Inclusion Diane knew that he had ALL Play and the K-12 Project is poised to been blessed with an Inclusive Service Learning continue to make an unprecedented opportunity Program – were closely impact with thousands of to turn their shared goal evaluated with children nationwide as well into reality. Clay overwhelmingly positive as raise the national announced the formation results. Children with and consciousness about the and purpose of his without disabilities in these need for and benefits of foundation on national programs saw growth in inclusion. To learn more television and his fans motor skills, social skills, about The National responded with over $1 and self-esteem, and the Inclusion Project or ways CCA’s own Annie Reeves gave birth to her second son, Caden million of support. Since impact of the friendships to get involved visit their Cole, on October 26th. that time, the National they made will last long web site at Inclusion Project has into the future. The www.inclusionproject.org . established itself as a National Inclusion Project leading voice for inclusion provides the training for 8 fundraising news 4th annual wendelyn’s course of dreams

s a lead-in event to aSeptember’s “National Craniofacial Acceptance Month,” the 4th Annual Wendelyn’s Course of Dreams was held Saturday, August 22nd at Country Club of Arkansas in Maumelle, located just outside Little Rock. On an absolutely gorgeous day, 60 players were greeted with an assortment of provided by Ben E. Keith Brady and Tim Morton of the event!) Everyone pastries, compliments of Distributors , and water Restaurant 1620 and participating, directly or Maumelle’s Super Center provided by Rainwater, participated in a live indirectly, has helped to and an assortment of Holt & Sexton Law Firm . auction while waiting to heighten awareness and drinks provided by Coca- At the turn-a-round, they find out who won the foster acceptance for Cola Bottling of had the opportunity to competitions. individuals living with facial Arkansas . view a slideshow of CCA Wendelyn would like to differences! After Tim Jenkins , Annual Family Retreats thank her volunteers Mark your calendars now owner of the club, gave while enjoying ice cream whose help made it a for the 5th Annual the rules for the novelties by Blue Bell wonderful event: Roberta Wendelyn’s Course of competition, Wendelyn Creameries . Long , Cindy Ford , Linda Dreams to be held gave a brief overview After completing 18 Dicus , Pamela Barker , Saturday, August 28, about CCA and the role holes, players enjoyed Oginga Carr , and Payton 2010 at Country Club of they play in the lives of lunch catered by Evette Berklite . Arkansas in Maumelle individuals with craniofacial Thanks also to the which will be followed by conditions. Then, she told support of many other the 2nd Annual Smiling her own story of living with businesses and individuals Through the Mask , black- craniometaphyseal as well as Tammy Taskey tie dinner at Restaurant dysplasia. with Academy Sports , 1620 on Sunday, Throughout the Lindy Blackstone and her September 19th , to tournament, golfers and crew at 103.7FM the commemorate “National volunteers enjoyed snacks BUZZ all-sports radio Craniofacial Acceptance station and local ABC Month.” Both events affiliate , KATV , Channel promise to be very 7 for all they did to enlightening and loads of promote this event and our fun! cause. (Channel 7 had a foursome and their own, Steve Sullivan , aka “Sully” helped promote the competitions and raffles at the beginning of 9 daniel , from page 1 recovery our “Little Man” last six-month check up, did not know what was was on a ventilator. A the Orthopedist thought actually wrong. three-month-old baby Daniel’s thymus gland was On January 11, 2006, should not be on a too large. We contacted Daniel Lloyd was delivered ventilator! He was moved Daniel’s pediatrician at three-and-a-half weeks early, to ICU, and the next day Kaiser and another MRI weighing a healthy 7 his surgeon said he was showed Daniel’s thymus pounds, 14 ounces! Once going to remove the gland to be full of and his airway was secured he breathing tube and see surrounded by lymphatic was taken for a CT where it how Daniel did. He said he tissue (macro and micro was confirmed he had a wanted to do this in the Daniel after a surgery cystic). His cystic hygroma cystic hygroma. He was OR just in case Daniel’s actually runs down to his placed on a breathing tube airway was too Carinatum) and mild liver. Daniel had a short in the NICU. By the second compromised and surgery scoliosis. break from doctors’ day the tube was removed. would need to be done. In January 2008, Daniel’s appointments while we We were told he would Seven hours later, we saw airway was obstructed. attended the CCA Retreat more than likely have to be the surgeon. Daniel’s During a bronchoscopy, the in Grapevine, TX. But in the NICU for two months, “chubby cheek” had been doctor’s found Daniel’s immediately following in but he came home in six resected and sclerotherapy airway would completely July, Daniel was scheduled days! We were not prepared (a treatment used with a close when his head was to have a right-side hemi- for him to come home so chemotherapy agent to turned to the left side. thymectomy and more soon. Two very sweet ladies treat vascular During the next surgery, sclerotherapy done. from church showed up on malformations) had been doctor’s removed his Daniel loves his doctors, our doorstep with a new done. His surgery was tonsils, adenoids, which is a huge blessing. crib, diapers, wipes and successful. redundant tissue and did He has nicknames for most clothes. A few days later our Daniel only slept on the more sclerotherapy. He was of them. His doctor’s are so church family threw a baby right side for the first three in ICU this time for seven good about listening to me shower for Daniel. Blessings months because his cystic days, mostly on a ventilator. and very good at educating surrounded us! hygroma was too heavy for In April 2008, Daniel had me. Daniel has been in His first couple of months him to turn his head. He major dental surgery physical, occupational and were, “wait and see” times. wore a corrective helmet because of bacteria getting music therapy for the last On April 4, 2006, Daniel for plagiocephaly, and we trapped on the hygroma two years. He enjoys his went in for his first MRI. had to drive two hours side of his mouth. In therapy time and the During the scan, Daniel’s each way every other August, I heard the same therapists. right lung collapsed. When Friday to have his helmet horrible breathing sounds I Daniel has a big huge we went to see him in adjusted. We did this for had heard when Daniel smile. He laughs a lot and almost a year. had airway issues the first loves to play, especially Daniel has had five time. This time an outside. He has mastered sclerotherapy treatments. obstruction was growing at his first scooter and During the next year we the back of his tongue continues to amaze us. We found out Daniel had mild near where his tonsils had encourage him to try most hemi paresis on the left been. The obstruction typical activities. I am so side (Cerebral Palsy). He could be seen when he happy he is my third child wears an ankle foot opened his mouth. Daniel or I may have coddled him orthotic (AFO) and a hand had another surgery. too much. splint. He has a chest wall Daniel is also treated at He watches baseball with our local Shriner’s Hospital Daniel at 3 months old. deformity (Pectus his brothers and his for his scoliosis. During his 10 continued next page
Wars action figure fan and also loves Dora! Daniel is such a blessing, not just to our family, but to everyone he meets. He is a gift from God. We are so thankful for our family, church family and our friends who have supported us over the past Daniel at 2 years old. three years. We know Daniel has more bridges to favorite player is David cross and valleys to walk Ortiz. He recently went to through, but we will his first AAA baseball game continue to hold his hand Sammi (right) and her friend Kayleigh and had a blast. He likes through his journey. playing soccer and was so lemonade sale for cca happy to receive a soccer pattern on his last AFO. CA kid, Samantha Wayne of Coatesville, PA, got Daniel will start preschool in August and is more than ctogether with her friend, Kayleigh and put up a ready! He is an avid Star lemonade stand during her mom, Jennifer’s, rummage sale and brought in $335 for CCA! Wow Sammi, THANKS ! Kids Klubs cca’s yahoo support groups CCA is now offering support groups for 3 ages! s Klub Kid Middle School Age: http://health.groups.yahoo.com/group/ccateens_ middleschool/ Kids K lub High School Age: http://health.groups.yahoo.com/group/ccateens_ highschool/ Adults: http://health.groups.yahoo.com/group/ccakids/

If you would like to join one of our online support ant to stay in touch with your CCA friends groups, please visit the links above or contact CCA’s wthroughout the year? Join one of CCA’s Kids Klubs. Program Director, Annie Reeves, [email protected] You’ll talk with other kids your age, make new friends, play games, and take part in discussions. Sign up for one of four age groups: Kindergarten through third grade, For a complete list of our fourth and fifth grades, sixth through eighth grades, and programs and services, visit: ninth through twelfth. Each level has age-appropriate www.ccakids.org/prg.asp activities that will keep you connected. So join your CCA friends now and let the fun begin! LOOK FOR THE COMPLETE Contact Annie Reeves for a Kids Klub application today! 2009 DONOR LIST IN OUR NEXT ISSUE 11 fundraising news third annual seth’s stride for cca by Stacy Swihart

Jaci Samhammer and Country Dance Bash goers, Brittany Stevens and Suzanne Ronczka jaci’s country dance bash

Gabe (4), Mitch, Stacy (standing), Sydney (3) and CCA Kid Seth (6) aci’s Country Dance Bash was held on Saturday, July 18, j2009 at the Elks Lodge in Fairless Hills, PA. t was another great year This was an afternoon of dancing, food, and fun. We ifor the 3rd Annual Seth's raised over $2000 for CCA by ticket sales, donations, Stride for CCA. We couldn’t 50/50 raffle, and an auction. Some of our generous have had more beautiful sponsors were: Knights of Columbus , Sons of the weather! There were many American Legion , Philadelphia Flyers , Philadelphia new faces this year, which is Phillies , Sesame Place , Curves , LA Fitness , WAWA , always exciting! New faces = more awareness of CCA and Country Music Fever , Olive Garden , Yardley Flower our awesome kids. We were honored to meet two new Company , Lower Bucks YMCA , Cold Springs families. Julie and Pat Foley from Columbus, Ohio came Beverages , Cramer’s Bakery , American Legion with their eight beautiful children. Their son, Kevin , has Knowles Doyle Post 317 , and Congressman Patrick Apert syndrome and is such a sweetheart. We also got to Murphy , as well as may other individuals and businesses. meet Melissa Hunter and her boys, Braden and Colton . Brochures, information, and a PowerPoint presentation It was so nice to see them all were available to familiarize everyone with CCA. hanging out and enjoying the day. Special thanks to Mickey McAllister for tremendous Thanks for coming you guys! help in soliciting donations and assisting in more ways I want to thank our sponsors: than we can list; Elizabeth Xibos and Trish Hallam for Marathon Petroleum , JMW helping to sell tickets, decorating, and promoting this Trucking , E&M Liberty , Yoho event; Ken Kotnarowski , our bartender, decorator, setup Photography and Jim and Barb person; Harry Beerhalter , our DJ who volunteered his Maraccinni for their continued services, and Lydia support, and my committee of Devlin and staff at volunteers for making this event the Elks Lodge, who Seth and baby Kevin possible! We are helped make this already looking forward to next year! event a success.

12 Jaci Samhammer and Mickey McAllister fundraising news second annual alexa’s appeal jewelry sale for craniofacial awareness for cca

ver since reading a helping her enewsletter story about with the hotel Jeremy Dale in our Spring, costs for 2004 issue, Peggy Alexa's surgery McDannel , a Cher fan and and selecting Cher Convention enthusiast their family for became permanently one of the attached by the heartstrings sponsorships to CCA and our cause. She is Comedian, Cash Levy, CCA Kid Alexa and her for the 2009 an avid fundraiser for Children’s Craniofacial Association, mom, Denise Rast Retreat, she knew caring for CCA kids like Jeremy by raising funds with email they wanted to give back to appeal letters and most recently, by selling her hand- he Second Annual help others as well. crafted earring creations and bookmarks at local Alexa’s Appeal was an t Denise's main goal is to gatherings in her Limon, Colorado hometown. She amazing night filled with spread awareness and donates 50% of all sales to CCA. We applaud Peggy for tears, hugs and laughs. The acceptance for those living her years of dedication. Many thanks Peggy! evening included a with craniofacial delicious dinner, an conditions. In her small emotional video of CCA town she tries to reach as families and friends, and a many people as possible. comedy show that left This year’s event had a everyone in stitches. heart-wrenching cca wish list Denise Rast started this presentation showing what • Regular Bond Copy Paper • Large quantity break- event last year after finding these children must endure • Card Stock (Cover away lanyards for retreat out her daughter, Alexa , during surgeries and Weight) Paper name tags had Coronal Craniosynotosis . recovery. Then a Comedy • Boxes of Crayons • Screen and projector for She found CCA and Central comedian named • Used cell phones, empty powerpoint presentations reached out to them. After Cash Levy , who just ink & laser cartridges for • 2-pocket folders returned from Afghanistan recycle rebates • Report binders 2009 FAMILY FUNDRAISER • Cases of bottled water • Manilla letter-size file GOAL THERMOMETER where he was performing for our troops, put on a • Candy canes for holiday folders 100% $175,000 show that had everyone party • 11x14 ‘craft’ envelopes 90% laughing. • Golf-related items for • 9x12 white mailing 80% With help from the charity tournaments envelopes 70% community and local • Hand-cart dolly that folds • Avery Labels #5962 60% businesses, Denise was down like a flatbed for • Airline Miles 50% able to reach out and help hauling newsletters • Big quantity of large tote 40% spread awareness and • Easel flipchart pads of bags for retreat 30% acceptance for people paper • Colored Pen Sets 20% living with craniofacial • Portable headset (gel/roller ball) 10% conditions. You can see microphone/amplifier • Regular and Fine Tip more pictures and what • 8 or more gig flash drives Sharpie markers-all colors people are saying about • Postcard stamps / • White rectangle flag map this event at postage pins www.alexasappeal.com . • Badge / Button maker 13 development director , from page 1

your own family. This expertise for day-to-day packages and collaborates festivities at our annual memory illustrates the functions. on other projects such as family retreat and are gifting importance of the in-kind Beginning in 2010, we Craniofacial Acceptance footage to assist with cause donation (goods, not funds) will add some degree of Month; Fred and Rose awareness and marketing of to a fundraising effort. “in-kind” acknowledge- Seitz of Directed Children’s Craniofacial While nonprofits are ments to our list of donors Technologies, Inc. in Association. And the list advised to look to in-kind published in our CCA Youngstown, Ohio, have goes on. giving during our current Network newsletter and been hosting our website We constantly reach out economic woes, this has posted online (as always, for more than a dozen to our CCA “family” for been the practice at CCA unless anonymity is years; Kurt Allen, JD, CPA, that first egg and you since our beginning. We requested). Until then, I’d CFP, WMA in Canton, Ohio, haven’t let us down for 20 now have a cache of in-kind like to recognize some of helps with legal concerns, years. Whether you’re supporters giving time, the in-kind giving that has documentation and donating the egg or buying talent and in-kind treasure helped our organization accounting advice; Bill and it, you’re helping CCA to help sustain funds when grow: Christine Mecklenburg of kids! Thanks to all of you cash donations are down. Cathy Evans , a former Coto de Caza, California, who are helping, giving— This enables us to use an board member from our donate our custom-printed whether “in-kind” or in impressive percentage of Dallas headquarters area, T-shirts for CCA’s annual cash. our resources directly garnered the donation of family retreats; and Linda Just as we are feeling the toward forwarding our our furniture, and Dana Vala and other Cher fans , pinch and shortfall from the mission. Heter of Direct Strategies who plan and participate at current economic climate, Non-monetary gifts have in Richardson, Texas, the bi-annual Cher we understand it is affecting always been an important contributed another desk as Conventions to benefit everyone and we are part of everything we do, we grew. Neighboring suites CCA, donate entertainment extremely grateful for each from raising funds for in our building have given at the event, collectibles for and every donation. No gift programs and services us file cabinets, office auction and merchandise for is too small or insignificant, to subsidizing general supplies, and they also sale. all are helping make a office operations. Our regularly relinquish their We currently have a difference for CCA kids! organization utilizes empty computer ink motorcycle raffle for a bike Best wishes for all the significant volunteerism cartridges for CCA to rebate donated by Johnny Pag blessings of the season and with a board of directors, for cash instead of turning Motorcycles , a long-time a prosperous 2010! regional and local them in for themselves. supporter of CCA (see this volunteers, and families Robin and Bruce issue’s “Donor in the Jill Gorecki Patterson holding fundraising events Williamson of Williamson Spotlight” on page7); C.R. CCA Development Director around the country to Creative Services provide Conant and colleagues at extend the reach and graphics and marketing Liquid Logixx and Mark P.S. In the spirit of in-kind proficiency of only 3.5 paid expertise; Lisa Vernon of Menza in Dallas produced a giving, we’ve included a employees for the entire Vernon Creative has remarkable PSA for CCA at CCA “Wish List” on page nation. donated all graphics work no charge; M3 Films taped 13. CCA’s list of in-kind for our fund appeal our 20th Anniversary donors is extensive and includes numerous gifts for our family fundraisers and special events for auction, raffle and door prizes as well as contributions of Recently launched, is a social network called www.JackTheDonkey.com Please register and name Children’s Craniofacial Association to benefit! Thanks! 14 the jorge posada foundation’s eighth annual heroes4hope gala

CA is proud to have emceed by Harold cbeen invited back as a Reynolds , Major League member of the Circle of Baseball’s on-air Beneficiaries for the personality. Harold also Heroes4Hope Gala on moderated a Q&A session Thursday, September 10th with the famous catchers, in New York City. The gala including notables like CCA’s Development Director, was hosted by Jorge and Jorge Posada , Yogi Jill Gorecki and Executive Director, Char Smith meet Laura Posada and their Berra , Rick Cerone , Don CCA Kid Jeremy Dale meets singer, Jon Secada children Jorge Jr . and Slaught , Ralph Houk , and Yankee shortstop Derek Jeter Jose Molina . bags upon departure made Kent Penwell , Amy An online auction began it a memorable evening. Rowland-Smith , Michael 2 weeks before the Gala Through our beneficiary Amatrudo , Gary and ended a week circle participation, Tiepelman , Eliza Kraft afterward with a few items Children’s Craniofacial Olander and Brian auctioned live during the Association will be granted McHenry . We are evening including funds for our programs extremely grateful to all of Kristine Dale and CCA board autographed catcher’s mitts and services, because of these friends and those at chairman, George Dale (right) the generous participation the Jorge Posada enjoy the cocktail reception on each table. A motorcycle with fellow CCA board donated through CCA by of folks like Bill Foundation for this member, Bill Mecklenburg Johnny Pag Motorcycles Mecklenburg and wonderful opportunity to Paulina . The couple gave a and signed by Jorge and Christine-Condino help more CCA kids and heartfelt accounting of the famous guests was Mecklenburg , George their families. what they had gone auctioned to a winning and Kristine Dale , Bob through with Jorge Luis bidder for $29,000. (See and Molly Lytle and The and how they decided to “Donor In The Spotlight,” Redwoods Group create this wonderful page 7.) Two tickets Foundation , Platinum organization to help other donated by Cher to see her Reinsurance , Chartis , families coping with similar Vegas show in Caesar’s Ironshore Insurance , craniofacial challenges. Palace and meet her Allied World Assurance This year the gala backstage for a photo op Company , Partner honored the 20 Greatest were also auctioned. A Reinsurance , Guy Yankees catchers and was highlight of the night was Carpenter & Company , Rob Gorecki gets singer Jon Secada who, at another photo op one point, was with the Posadas accompanied on guitar by NY outfielder, Bernie Williams . That, along with more fine entertainment, a complimentary cocktail reception, a 3-course meal

Christine Condino-Mecklenburg served with wine and gift and Bill Mecklenburg Brennan Lytle (second from left) and his dad, Bob, visit with Jorge and Laura Posada (Bob wore a photo badge of his CCA kid, Avery, on his lapel) 15 thanks for your help, cca! By Jennifer Ford

remember it like it was we felt the best outcome been there to iyesterday. I was 30 for our daughter would be meet our weeks’ pregnant with to go out of state to a traveling needs. Sydney , my second child. I doctor in Boston. We traveled for a just had a 3-D ultrasound, We had no clue how to two-stage which indicated she would make this financially lip/nose repair, be born with a cleft lip and possible, since our income palate repair and palate. I had never known is very limited. After talking then to two anyone with any facial to other parents, I found annual cleft difference and I went others who also chose to clinics. I know through about every go out of state for their there are more Sydney Rose BEFORE surgery, 5 weeks old emotion possible. child’s medical care. They surgeries in my I searched the Internet to told me about CCA and daughter’s learn as much as I could to how they could help us. I future, and it’s help my baby and met emailed Annie Reeves, nice to know many other parents going CCA Program Director, and CCA is there through the same thing. the rest is history! wanting to help We researched and found Our daughter’s first families like ours several surgeons across the surgery was at seven weeks get to qualified country; we met with the old. Things were so hectic medical care. local cleft surgeon in our those first few weeks with With CCA’s help state twice. learning how to feed her, we didn’t have I think choosing the dealing with reflux, hearing to worry so surgeon that would change issues and trying to plan for much about the my precious daughter’s an out-of-state surgery. But traveling part face forever was probably in a very short time, CCA and we could the hardest decision my was there supporting and focus more on Sydney Rose AFTER surgery, 18 months old husband and I have ever helping us. taking care of our made. We knew it would We have had to go to daughter before and after happiest, healthiest little probably be easier to stay Boston five times in the surgeries. girl I know. close to home, but after past two years, and every I continue to be in awe It’s difficult to put into much prayer and thought, time Annie and CCA have that such an organization words how much CCA’s even exists! The help CCA help has meant to us, but I has given our family to get look forward to one day financial assistance our daughter to the doctor meeting these very special of our choice is the most CCA angels that are now part of our family and o you travel to receive quality medical care? amazing gift we have ever dIf you do, and need financial help, CCA has a received. I honestly don’t thanking them from the financial assistance program that will help with know if it would have been bottom of my heart! food, travel and/or lodging. Call CCA for an possible without CCA, and application at 800.535.3643 . All we ask is that I thank God for them every you apply at least four to six weeks prior to night. Sydney is now two your next appointment. years old and is the 16 Craniofacial Acceptance Month

his year marked the fifth tyear CCA observed September as Craniofacial Acceptance Month across in the paper. Radio stations September Craniofacial the nation. CCA families, also ran PSAs throughout Acceptance Month in their friends, volunteers and the month of September. state! In addition, Craniofacial Acceptance related support groups And this year, the Congressman Mike Ross Month. CCA families held widened the circle of governors of Alabama, of Arkansas and picnics in California, acceptance for individuals Arkansas, Connecticut, Congressman Eric Cantor Florida, Missouri, Nebraska, with facial differences. The Indiana, Kentucky, of Virginia both submitted New Mexico, Ohio, Texas goal is to create awareness Louisiana, Maine, congressional records for it and Utah! that beyond the face is a Michigan, Minnesota, on the House floor. They CCA thanks everyone for heart and the true person Nebraska, New Mexico, also acknowledged CCA's all of their hard work in within. North Carolina, Oklahoma, 20th Anniversary. making Craniofacial Many of our CCA families Tennessee, Texas, Vermont, For the second year, CCA Acceptance Month such a were able to get their local Virginia, Washington and held National Picnic Day in great success! newspapers to feature them Wisconsin each declared September as part of Photos from picnics across the country

17 2nd annual ryan’s road for cca fundraising news

n September 19, 2009 and then worked the arranging the lunch in team totals raising over owe held our 2nd event. Even though it was donations! After lunch we $750 for CCA! Thank You! Annual Ryan's Road for smaller than we hoped, we all pulled out our raffle Our top sponsors were CCA walk at the raised over $500 in 2 tickets. Over 50 items were Gas Field Specialists , Horseheads Holding hours! It was so much fun. raffled off to our lucky Schweizer Aircraft , Point . It was a great Ryan got to help seat winners. The grand prize Emery Industrial Supply , success. We were blessed guests and bus tables. He winner of the gas grill Five Star Bank , X-Gen with great fall weather thought that was great. He valued at $600 was Pharmaceuticals , The and a wonderful turnout even got to serve his Charlene Tompkins . In Dairy Barn , Dandy Mini from our local community. grandpa pancakes! addition, this year we Mart , the Gulich Family , This year we held a few The grand finale was, of added a silent auction! the Dale Family , the mini events to add to course, the walk! We had A special thanks to Steckowski Family , and our fundraising total. about 100 community Tanya Mattison for ALL the Peters Family . Altogether, we raised members come out for the your hard work helping A special thanks to the over $7,000! walk this year. We kicked Ryan Sr. and I put on this Dairy Barn , Julie and Jim We kicked off our events off the walk with a fun run event. For the second year Kucko and staff for selling at Sam’s Club . Our for the kids. Ian Tanya has put in countless $53 worth of CCA hangers mission was to spread Aepelbacher won for the hours towards helping us to your patrons during the awareness of CCA and 6-9 yrs. run and Lauren organize and plan the first two weeks of Ryan’s walk by passing out Gulich won for the 3-5 yrs. walk. Thank You Tanya! September! Thanks also to brochures. We sold raffle run. After the run, the kids Thank you to our Gerould’s Pharmacy for tickets for a gas grill that joined their families for a committee members and taking donations! was donated anonymously. great fall walk. Then we Team Leaders; Tanya This year was such a We took donations and enjoyed a picnic-style lunch Mattison , Dorie community effort. also sold candy bars. donated by Corning Hughson , Jessica Drake , nteresting to note, with The last Sunday in Catering , The Dairy Debbie French , Lauren the decrease in donations August we held a pancake Barn , Frito Lay , Herr's , Schnautz , Vickie from our corporate breakfast at TGI Friday's . and Strohman's . A huge Whitaker , Beth Smith , sponsors, individuals dug Our family and friends got thank you to Danielle Jeanie and Craig Smith , deep and gave more—even together and pre-sold Peters , Debbie French , Tyler Mattison , and during this tough economy. tickets for the breakfast and Julie Kucko for Danielle Peters . We are truly blessed with Our top team was such a loving and Jessica Drake and Judy accepting community! Hillman . These ladies sold Thank you to all who raffle tickets for the gas participated! We look grill, pancake breakfast forward to seeing you at tickets, and held two bake the 3rd Annual Ryan's sales at their county office! Road for CCA! Their team was the highest The Gulich Family

18 fundraising news jylian’s links of love golf tournament

Janicek at Chick-Fil-A on Bryant Irvin in Ft. Worth, What-A- Burger , Winchester Carlisle Real Estate Partners , Direct Strategies , Team n Monday, September complimentary beverage Margaret , and o28nd the 2nd Annual cart throughout the day many other Jylian’s Links of Love golf (provided by local supporters tournament was held, distributors, Coca-Cola , throughout the raising over $10,000 for and Coors ), and a DFW Metroplex CCA! barbeque dinner (from and beyond. CCA kid, Jylian Bilbow Spring Creek Barbeque ) Thanks to is the daughter of John following golf. volunteers who Jylian , Mikey , Ivy , and Kendall Bilbow from We are extremely came out to help: Lee Kendall and John Bilbow . Arlington, TX and she was grateful for the Gwatney , who lent his And, of course, we could the perfect representative sponsorship, both in-kind golf skills for the ‘Beat the not hold a successful event for the event, visiting and and monetary, of Pro’ competition, Rene without our wonderful posing with golfers. numerous friends of CCA Kamper and Clint & Jodie golfers and all the Whitestone Golf Club in including, Southwest Hall all of the Ft. Worth companies who supported Benbrook graciously hosted Airlines , Avid Golfer Police Dept., Andrea Daily us by sending teams. the event once again with magazine , area Marriott and Dick Smith from the Thank you so much for the help of Susan Grawe . hotels, golf stores, area Ft. Worth Cats, Jane participating! We had a Golfers were treated to merchants, Monell , Rob Gorecki , great time and hope to see lunch upon arrival, a Chamberlain’s , Mike everyone again next year!

19 Honorary Chairperson: Cher Board of Directors: George Dale, CHAIR , Corning, NY Kurt Allen, JD, CPA, CFP, WMA, Canfield, OH cheers Tony Davis, DMD, Tuscaloosa, AL for volunteers! Donna Gossett, Cullman, AL Paula Guzzo, Evansville, IN 3 Bill Mecklenburg, Morrisville, NC Erica Mossholder, Tuscaloosa, AL Rose Seitz, Youngstown, OH Robin Williamson, Carrollton, TX Stephen Wright, San Francisco, CA Medical Advisory Board: elly Liszt has been editing the CCA Kelly just had a baby girl in May, and Jeffrey Fearon, MD, CHIEF ADVISOR kNetwork newsletter for the past seven right now she is juggling new motherhood CCA Network Editor: years. She also interviews and writes the with freelance work and her CCA Kelly Liszt CCA Kid feature within each issue. “I love responsibilities. She wonders if there could CCA Network Design and interviewing the kids,” she says. “They’re be more than 24 hours in a day just to Production: so amazing, and I learn something valuable catch up on everything, especially sleep. Robin Williamson, Williamson Creative Services, Inc. from each and every one of them.” “This is such a magical time for me. I’m Although she lives in Miami, Kelly grew enjoying every minute of being a mom; Executive Director: Charlene Smith up in Texas. In fact, she’s a sixth-generation however, I could do without singing B-I-N- Texan. “I love Florida, but I sure do miss the G-O in my dreams.” Program Director: Annie Reeves Texas hospitality—and the great BBQ of Thanks, Kelly, for all that you do. Three course.” cheers from all of us at CCA! Development Director: Jill Gorecki Patterson Administrative Coordinator : Jana Peace NONPROFIT ORG children’s craniofacial association U.S. POSTAGE 13140 Coit Road, Suite 517 • Dallas, TX 75240 PAID VOICE 214.570.9099 RICHARDSON, TX FAX 214.570.8811 PERMIT NO. 128 TOLL -FREE 800.535.3643 URL CCAkids.com or CCAkids.org

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