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Thankful for Crouzon Syndrome

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Thankful for Crouzon Syndrome ccanewsletter of the children’s craniofacialnetwork association Cher—national spokesperson 2017: Issue 1 inside cca kid delaney cunha . .2 cca teen alyssa rieger . .3 cca supersibs dayna and tyler rieger . 4 gingertown dallas . 5 dallas holiday party . 6 midwest holiday gathering . .7 message alexa’s give back campaign . 8 from the change the world with wonder . 8 executive it made a difference director to that one . 9 Individually we are rare, 3 cheers for volunteers . 10. but together we are donor in the spotlight . 10 thankful for strong. thank you CUSD and KISD . 16 his is the tagline for crouzon syndrome Rare Disease Day, which testimonial . .16 By Ashley Rhodes t the world celebrates every positive exposure . .17 grew up with a moderate case of Crouzon syndrome . February 28 . We celebrate calendar of events . 18 iIt was both my curse and my blessing . I thought once I this day because one in 10 new wonder shirts . .18 finished having all my surgeries, grew up and became an Americans live with a rare retreat sponsors . .23 adult that the syndrome would be behind me . disease or disorder, and 50 2016 donor list . 19-23 I was wrong . percent of those patients are What I found out is it is always with you and is always children . alexis’ ice cream “Celebrate” may seem meet-and-greet . 24 a part of you . It shapes you and how you see the world . What I once hated, feared and could not wait to get rid an odd word to use for of, I am now so very blessed by, grateful for and I cannot recognizing this day, but we use it because we are imagine my life without it . celebrating the fact that we I was raised in Kentucky, the middle of three kids in a can travel this difficult road middle-class family . I was the only person in my family together . We are not alone with the syndrome . A spontaneous mutation is what it is in our moments of despair, called when you are the first person in your family to get and we are bound by the see thankful, page 12 see executive empowering and giving hope to individuals and families affected by facial differences director, page 11 ive-year-old Delaney and the Roadster Racers, fCunha is only a Elana from Avalor, Doc Kindergartener, but she is McStuffins, and Sofia the one busy girl . She really First . likes school, where she Delaney has plans for the ccakid gets to meet new friends summer . She’s headed to and play with them on the Boston for appointments playground . Her favorite and to visit her family, plus subjects are art and recess, she’s headed to Virginia and she loves riding the and Washington, DC, for bus to school . the CCA Retreat! She also After school, Delaney loves going to Orlando and goes to Extreme Youth Disney World for vacation, Sports . She has the chance too . to try a lot of different Her first etreatr was last activities like karate and year in Fort Lauderdale, dance . Over winter break, and she had so much fun all her grandparents came hanging out at the pool, to her house, which she dancing the night away enjoyed . She also went to on Saturday, and meeting Busch Gardens and had a new friends . She enjoyed super-fun time, especially the entire weekend, and so climbing in the big did her mommy and daddy . treehouse . They are counting the days In her spare time, you until this summer’s retreat! may find Delaney painting Delaney was born with pretty pictures, cooking or Pfeiffer syndrome . Even baking something yummy, though she is only five, or singing or dancing to she has some practical songs from Frozen, Doc advice for other kids going McStuffins, or anything by through something similar: Taylor Swift . Or she’ll be “Listen to your doctor and reading an Amelia Bedelia, nurse, and tell someone Pinkalicious, Curious if something is bothering George or Sofia the First you .” Well said, Delaney! book . Her favorite movies at the moment are Tangled, Despicable Me, Minions, and The Little Mermaid 1 and 2 . As for TV, she loves just about anything meet delaney on Disney Junior, cunha including Mickey Delaney with parents 2 Steve and Kelly ccateen meet alyssa rieger y name is Alyssa both been very supportive mRieger. I am of everything that I have to 14 years old and I am go through, even though it from New Jersey . I was is hard on them too . born with Lambdoidal When I am older, I want Craniosynostosis . Since to work with children . I my diagnosis, I have enjoy playing with and had six surgeries for my teaching toddlers . They condition, including two are so much fun . I plan to cranial vault reconstructions teach kids early in life that and one frontal orbital bullying is not nice . advancement . I had my My first retreat was in latest surgery on March 30 . 2016 . It was one of the I love to bowl, and I best experiences of my life . won a state tournament I met kids who were going that led me to a national through what I was, when tournament in Chicago I had previously thought I when I was just 12 years was all alone . This made old . I also enjoy listening me feel better about myself to music . My favorite artist and made me feel good to is Selena Gomez . After know that my family and I my fifth surgery, I got to had support all over . I can’t meet her at the Children’s wait for the next retreat to Hospital of Philadelphia . see old friends and make My favorite TV show is The new ones . Vampire Diaries. I have an older sister, Dayna, and a younger brother, Tyler . They have 3 meet dayna and tyler rieger y name is Tyler why retreat is so fun . I get mRieger. I am 10 to spend time with my years old and I am in fifth family and I make a lot of grade . My favorite things friends . I really enjoy going to do are watch YouTube and meeting new people, videos and play games . with new conditions, and When I am bored, I from new places that I can like to hang out with my hear all about . friends and family, and I feel special being the sometimes we play games . sibling of a CranioKid . I also like to watch and play My sister shows me how Pokémon . I am in band and important it is to be nice to y name is Dayna favorite people to be play the xylophone . I also everyone and teaches me Rieger and I am 15 m around . I love keeping in sing in our choir in school . how to be strong through years old . I’m a sophomore touch with friends from I’m very good at math and the worst of times . I hope in high school and am in retreat and am sad I will I get good grades . that I can help teach others band, which keeps me very miss being there with my I love my family and everything I have learned busy, but I love it . I play the family this year . friends very much and marimba and the piano by being Alyssa’s brother . Living with a sister with spend as much time with extremely well . Craniosynostosis has them as I can . That is This summer I will be been hard but can also traveling with the Jersey be cool because I always Surf Drum Corps, this is just the beginning of all that have a story to tell . I went I wish to accomplish . This to my first retreat in Ft . opportunity will bring me Lauderdale . It has helped to many cities and states me because it exposed this summer to perform . me to other people with Music is my greatest other conditions besides passion . My dream is to Craniosynostosis . I met get a degree in music amazing people and other education and then go to siblings whom I could relate law school . I’m working to . I was afraid that I was hard for the grades it takes going to feel left out, but I to achieve this goal . ended up, of course, being My friends help me with just fine . everything, and they have really been there to support me through everything my sister has gone through . I spend all my time with them, and they’re my ccasupersibs 4 gingertown dallas: a sweet holiday tradition CA is honored to be PHOTO CREDITS: NORTHPARK CENTER cthe beneficiary of the annual Gingertown Dallas event at NorthPark Center once again . The 2016 event marks our 7th year as the recipient charity, and the theme this year was “London .” The intricate creations were displayed on the first floor of the luxury shopping center, so visitors could enjoy it as part of the art experience that NorthPark offers . Each year, teams of local architects, engineers, and design professionals build This delightful event Mitchell, Isabel O’Neill, raised $20,494 for CCA, and Shelby Foster of and we are so grateful to NorthPark Center; everyone who participated The David M. Schwarz and donated . We extend Architects Charitable our special thanks to Foundation, and the RJ Reissig, Project Gingertown Dallas Manager of NorthPark construction crew! Management; Pamela NorthPark Gingertown Dallas-2016 Participants & Donors: a stunning miniature town when they view the display . out of candies, sweets, Nunzio DeSantis HCBeck, Ltd. We visited the exhibit and Mark E.
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