messagefrom theprogramdirector

well, another retreathas already come

and gone. I honestly thinkthe retreat weekend is thefastest weekend of theyear! And, this year wasone of our largest retreatsto date. We had 92families join us from 27 ofthe 50 states, Canada, andSwitzerland! There wereseveral first-time retreatfamilies in attendance. Formany of them, this wastheir first opportunity tomeet another family whohas a child with acraniofacial difference. Tosee a child finally meet

empowering and giving hope to individuals and families affected by facial differences

newsletter of the children’s craniofacial association Cher — honorary chairperson summer 2010

see programdirector, page 8

when Nicholas was born in 2004, we were soexcited about the addition to our family. We

already had a four-year-old daughter, Taylor, and she wasso excited to be the big sister! My scheduled caesareansection went smoothly, and I remember thinking, “ThankGod everything went okay.”

Several hours went by and we still had not seen ourbaby boy. Finally, someone from the nursery came in tospeak with us. She told us that Nicholas was born with asmall hole in the roof of his mouth and was having somedifficulty feeding. The nurses at the hospital told us thatthis was the easiest birth defect to fix.

see nicholas, page 10

insidecca kidsydney rose ford . . . . . . . . 2cca gradjoseph brooks . . . . . . . . . . 3cca supersibtaylor ford . . . . . . . . . . . . . 4craniofacial acceptancemonth . . . . . . . . . . . . . . . . 5free 2011 hotel stay . . . . . 5jylian’s links of love . . . . . . 5retreat testimonial . . . . . 6-7more retreat photos. . . . 8-9good news . . . . . . . . 12,14donor in the spotlight . . . 13road scholar transport . . . 13cca bracelets for sale. . . . 15goodsearch & goodshop . 15testimonial . . . . . . . . . . . 16financial assistance . . . . . 16new webstore jewelry! . . 16fundraising news. . . . . . . 17cca mugshot . . . . . . . . . . 17calendar of events. . . . . . 18donor list . . . . . . . . . 18-193 cheers for volunteers . . 20

nicholas’ storyBy Carla Kifer

ccanetwork

Nicholas Kifer blowing bubbles – quite an accomplishment for achild born with a cleft.

meet sydney rose fordHer favorite movie is The

Little Mermaid, and sheloves watching Dora andSpongebob on TV.

She has a favorite pinkblankey that she has keptclose to her since she was ababy and going throughsurgeries, she adoresanything “mermaid orDora.” She also loves toplay dress-up with her manycostumes.

Sydney likes looking atbooks and painting thingslike mermaids, snakes andfish. She loves to swim andis looking forward to herfirst swim lessons thissummer in her quest tobecome, you guessed it, amermaid.

She also loves to makepeople smile and make surethey are okay. There isn’t aday that goes by thatshe isn’t making sureher mom has a smile onher face.

Sydney was born witha cleft lip and palate,and has had foursurgeries so far:lip/nasal adhesionand partial gumclosure, ear tubes, fulllip/nose repair andpalate repair.She will

have a lip and possible noserevision in the next year ortwo, and she will possiblyneed a pharyngeal flapsurgery around age five. Shewill definitely have palateexpanders to prepare for thebone graft around age eightto ten. Then she willprobably have a finalrevision around age 16 andpossibly get teeth implants.Right now, she’s enjoyingbeing in the “no surgeryclub” since her palate repairat 8 months old.

When she grows up,Sydney wants to beSpiderman, despite neverseeing Spiderman movies.Sometimes she also says shewants to be a doctor, amermaid (of course) or amommy.

sydney Rose Ford isalready ahead of her

time. She turned three thisJuly, but for some reasontells everyone she is fouryears old.

She has an older sisternamed Taylor, who will besix in October. They areabout the same size and areoften asked if they aretwins. They recently startedsharing a room togetherand are the best of friends.

She and her sister havequite the pet collection:three dogs, Tori, Tiffy andJasmine; a cat named Nala;a turtle, JJ and two hermitcrabs (Syd calls hers Mr.Krabs, and Taylor namedhers SilverNGold.) Sydneyloves to have hermit crabraces, chase the cat, andfeed the turtle.

Up until she turned three,Sydney attended a BusyBees preschool classthrough Early Intervention(EI), once a week for twohours. At 27 months, EItested her, and she was sofar advanced, she no longerqualified for the Busy Beesclass. Her parents stillwanted her in the class, andthe teachers wanted her tobe a peer role model, so shecontinued until her thirdbirthday. She is so excited tostart preschool in Ms.Foster’s class this fall,where her big sisterwent.

2 ccakid

Sydney has patientlywatched her sister takedance lessons and be in thechurch choir last year. Nowthat she’s three, she canstart both this fall—and shecan hardly wait. She loves alltypes of music. Just theother day she was listeningto her daddy’s hard rock,and was completelymesmerized dancing toJimmy Buffett!

This summer, Sydneywent with her family andgrandparents to the GulfShores (before the oil spill).She loved the beach anddoing cannonballs in thepool, but she was terrifiedof the ocean. She alsospent a lot of time with hergrandparents at the lake,and she loved ridingaround in the golf cart,making sure all the nearbyfarm animals were okay.Her grandparents aretaking her to Disney Worldthis Christmas, and she’sthrilled she has a chance tomeet Ariel, Flounder andNemo!

Sydney recently returnedfrom Boston with herparents, where she hadher annual cleft clinicappointment. She loves tofly and is so brave—sheheld her parents’ hands sothey weren’t scared!

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I love music, and I playpercussion in the UMWConcert Band. I was inmarching band for all fouryears of high school, and Ireally enjoyed every minuteof it. Marching band was alot of hard work, but it wasalso a great experience. Ienjoyed playing at thefootball games and goingon the Florida trips in thespring. We marched theSpectro Magic parade at theMagic Kingdom both mysophomore and senioryears—definitely somethingI will never forget.

I am also a diehard DallasCowboys fan. I got to seethe new Cowboys stadium,and I watched my Cowboystriumph over the Redskins7-6. The game was veryboring until the last fiveminutes, but the stadiumwas like nothing I’d everseen before. When I saw itfor the first time from theoutside and inside, I was inawe of how gigantic it was.

I was born with a rarecondition called Oto-Palatal-Digital Syndrome type II,and I have endured 42surgeries because of this.Eighteen of those surgeriesoccurred between April and

June 2009 when I went infor a Le Forte III procedure.All went downhill when thedoctor cut my perfectlygood VP shunt—I spent atotal of about three monthsin the hospital.

I almost made it to theretreat in Dallas, but I gotsick the day before I was toget out of the hospital,which was two days beforemy flight to Dallas. So theretreat in Boston was myfirst. It was amazing to meeteveryone.

My advice for youngerkids with craniofacialsyndromes is to just beyourself. If someone ismaking fun of you, youshould try to be nice to thatperson. If the teasingcontinues, then just walkaway and tell someone,maybe a friend or a trustedadult.

If someone is continuouslybeing mean to you, don’twaste your time on them.Stick with your friends andthe bully should not botheryou. Also, a good way tomake friends is simply bybeing kind to others.

ccagradhi, I’m Joseph Brooks.

I’m 20 years old andlive in Stafford, Virginia,which is about 40 milessouth of Washington, D.C.

I am a freshman at theUniversity of MaryWashington (UMW) inFredericksburg, Virginia,which is another 20 milessouth of Stafford. I ammajoring in psychology. I amnot really sure what I wantto do after college, but itmay have something to dowith aviation.

In fact, my favorite hobbyis anything to do withaviation, including aviationphotography. I love to fly,and my favorite kind ofplane is the Boeing 777. Iam also a fan of the Boeing737. In my spare time, I liketo play Flight Simulator X, a

pilot simulation game forthe computer, and I like tolisten to live air trafficcontrol feeds fromliveatc.net. I also enjoywatching airplane videos onYouTube. I have posted acouple of videos related toaviation on my YouTubepage. My username isairplanecrazy1989.

I live with three sisters—Jerilyn, age 22; Carrie, age15; and Cathryn, age 11.I also have an older brotherand sister—Jenny andJeremy. I love my family. Wehave had a lot of adventurestogether, such as gettingour flight delayed from 10p.m. to 2 a.m. in Honolulu,or driving across the countryafter landing in L.A. DisneyWorld trips are also a funfamily event.

meet joseph brooks

like karate, soccer andwhatever else she canconvince her parents to lether do! Taylor is lookingforward to camping atDisneyworld with hergrandparents for the firsttime this next Christmas,and especially wants tomeet Snow White!

Taylor was just two and ahalf when Sydney Rosewas born. Since that day,Taylor has been theremaking Sydney smile thewhole way. I worriedbefore Sydney was born ifTaylor would be scaredwhen she saw the cleft,but Taylor acted like shedidn’t even notice anythingdifferent. Even thoughSydney was always a happybaby, when Taylor walkedby, the world stopped andSydney’s whole face lit upeven more.

Taylor has taught Sydneyso much more than herparents or any of thespecialists she sees. Shehas not only helped teachSydney her colors andshapes, but she has alsotaught her how to bebrave like Madeline (achildren’s book character

t aylor Ford is five yearsold and starting

kindergarten in the fall.She is very petite for herage but has a larger-than-life personality and is aborn leader.

Taylor is just starting toread, and her favorite bookis The Human Body. Shegot interested in it after herfather was in EMT school,and now she can’t getenough of it. Her favoriteword is “phalanges” (fingerbones), and she canrecognize many parts ofthe body on sight.

She has a deep love ofhorses and all thingsprincess! She took balletand tap classes this pastyear, and loved performingon stage at her recital.Taylor is also in thepreschool choir at church.She comes home from allher activities and loves toteach her little sister, whoeagerly wants to dowhatever big sis does. NowTaylor wants to try things

who often repeats “I cando anything” when aproblem arises.)

Taylor went on her firstplane ride at three years ofage when Sydney (whowas 6 months old) had herthird surgery. As Sydneywas recovering fromsurgery in the hospital, shehad a Logan’s bow acrossher face, hundreds ofsutures, all sorts of wiresand tubing attached to herand struggled to just eat.Taylor would show up witha princess costume on anddance and sing to her littlesister, and Sydney wouldjust smile hearing hervoice.

When Taylor startedpreschool, she had to havesome minor speechtherapy. She would comehome from school andteach her baby sister whatshe learned—this helpedSydney to have exceptionalspeech. She has also taughtSydney how to makefriends and be outgoingand try new things.

Taylor has had her ownstruggles too. She hasbeen dangling off thegrowth chart most of her

life and struggling withfeedings. But, having ababy sister who eats greatand is steadily gaining insize has really helped Taylorpush herself to overcomeher feeding difficulties.She’s also had a lot ofdental work from thefeeding difficulties that hashelped prepare us for allthe dental stuff Sydney willgo through in the next fewyears.

I know both girls willhave many ups and downsto come in their life, and Iknow they will get throughit all just fine. That’sbecause they will alwayshave their best friend, eachother, by their side. I neverhad a sister, but when Iwatch my girls together, Iwish I had, and I am soblessed to be able toexperience their sisterlylove as their mom.

ccasupersibmeet taylor ford

4

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for our 2009 20thanniversary year we had

a special reward proposalto CCA families whohelped with fundraising –any family raising $5,000or more for Children’sCraniofacial Associationthrough December 31st ofthat year would beawarded one free hotelroom for their stay at thefollowing year’s retreat(i.e. 2009 fundraisingcounted toward the 2010retreat). This reward hasbeen extended indefinitely!

This invitation isextended to all CCAfamilies, including thosealready holding annualevents throughout the yearand it includes any type ofeffort. So all fundraisingefforts for 2010 will gotoward the 2011 retreat.

All families who wish toparticipate are asked tosign a confirmation form in

order that we may trackyour success and budgetfor your room. Pleasecontact the CCA office at214.570.9099, toll-free at800.353.3643 or emailJPatterson@ccakids.com formore information.

Try creating your ownFirstgiving page

A free CCA-customized“firstgiving” site isavailable for anyone whowants to help raise fundsfor CCA. Log ontofirstgiving.com/ccakids andtell your personal storyabout why you supportCCA or post an eventyou’re having. Then, allyou do is email your link toeveryone you know andask them to do the same!This is an especially easyway to “ask” for donationsif you’re uncomfortablewith the face-to-faceapproach.

free 2011 hotel stay!Fundraising reward extended indefinitely!

jylian’s links of love

save

thedate

Monday, September 20, 2010The Golf Club at The Resort on Eagle Mountain Lake

on Monday, September 20, 2010 Children’s Craniofacial Associationwill hold its third annual “Jylian’s Links of Love” benefit golf

tournament, this year at The Golf Club at The Resort on Eagle Mountain inFort Worth, Texas.

The tournament will begin with a shotgun start at 1:00, (registrationbegins at noon with lunch) and will end with dinner, awards, and auctions.

Call the CCA office at 214.570.9099 or visit www.jylianslinksoflove.comfor registration and sponsorship details.

craniofacial acceptance month

t his year marks the sixth year CCA will observeSeptember as Craniofacial Acceptance Month across

the nation. CCA families, friends, volunteers and relatedsupport groups will be widening the circle of acceptancefor individuals with facial differences. The goal is to createawareness of craniofacial differences and to get people tosee that “beyond the face is a heart.”

As part of the 6th Annual Craniofacial AcceptanceMonth, CCA will hold its 3rd Annual National Picnic Dayon September 11th (or other date in September of yourchoice). CCA families across the nation will hold picnicsgiving them a chance to get together with other familiesin their areas, while promoting awareness in thecommunities.

It’s not too late; if you would like to hold a picniccontact CCA Program Director Annie Reeves. CCA willinvite all of the families in your area and help you organizeyour picnic.

In addition to raising awareness and acceptance, CCA israising funds to support programs and services available toall individuals with facial differences and their families.Contact CCA Development Director, Jill Patterson formaterials about this year’s fundraising events.

We hope you will join this important effort! Please call800.535.3643.

when Trevor was borneight years ago, there

was no preparing for hisunexpected diagnosis ofhemifacial microsomia withmicrotia. Everyone asks whatthat means, and I tell them“half the face smallsyndrome” and he’s got whathe likes to call a “little ear.”

We have been using awonderful team of doctors atChildren’s Hospital ofPhiladelphia (CHOP), andwe couldn’t have asked forbetter care. We also foundpersonal and emotionalsupport through their patientliaison, Diana Sweeney, andshe told us about CCA.

Our family sees some ofthe other families whose

children are patients atCHOP, but there isn’t timeto make friends in awaiting room or really sitand share your stories witheveryone. We recognizedsome familiar faces, butthrough CCA we canactually get to know themon a totally different level.

Trevor endured sixsurgeries in the first fourand a half years of hislife—the most traumaticbeing when he had his jawdistracted at four years old.He has been a trooperthrough every procedure.

Trevor has received all thetherapies first through EarlyIntervention and thenthrough school—speech,

physical therapy andespecially occupationaltherapy. He also hasasthma and a life-threatening milk proteinallergy. After his latestsurgery he was diagnosedwith anxiety disorder.Trevor was also blessed,however, with an amazingspirit, gorgeous blue eyesfrom Grandpa George, anda sense of humor thatkeeps me on my toes andlaughing out loud daily.

My husband and I bothcome from very supportive,close families. They havebeen there through all ofit, and so have our closestfriends. No matter howclose though, no one can

fully understand thejourney parents go throughwhen gifted with a childlike Trevor, or any one ofthese beautiful children.The CCA retreat finallybrought that feeling ofsupport and understandinghome to us in a way that ishard to put into words.The only way to trulyunderstand what thisretreat does, and whatthis organization does, isto see it for yourself.

This year we attendedour first CCA retreat. Wehad no idea what to expectother than knowing itwould be a very emotionalexperience. Trevor is eightnow, so he was pretty

6

what cca means to usBy Kim Trzanowski

continued next page �

nervous to meet newpeople. He’s used to hissmaller circle of friendsthat don’t ask himanymore “What happenedto your ear?”

We arrived in Boston andwere very proud to attendone of the symposiums onprosthetic ears, as Mr.Barron was the man wesought to do Trevor’s ear afew years ago. During thissymposium, Trevorattended a self-esteemsession for children his age.It turned out that one ofthe families there happensto live about 20 minutesfrom us! Also, he hasn’tstopped sharing his bag of“feelings” they made inthat self esteem sessionsince we got back home.

This retreat was amazingfor all of us. Trevor metother children withhemifacial microsomia andalso other anomalies. NeverONCE did we hear onechild ask another childabout their face—it was a

complete comfort zone foreveryone there. I havenever before seen our sonso comfortable and notworried about who islooking at his ear or face.Also, they were veryaccommodating withTrevor’s food allergy too,which helped to ease hisanxiety.

His dad and I got toshare stories and speak toother parents who not onlyused some of the samedoctors and facilities, butwho also have had some ofthe same experiences andpain and heartbreakingmoments. We spent thosefour days at the retreatcrying—some were tears ofrelease, some were tears ofpast pain buried deepinside and some wereflooding tears of joy thatwe were not alone.

Every time we turnedaround Trevor was offsomewhere playing withhis new friends and smilingfrom big ear to little ear!

We have all made what Ihope to be long-lastingfriendships with otherfamilies both near and farwho share our walk with us.

CCA and the retreat haveprofoundly impacted ourlives—Trevor is alreadyasking about play dateswith his friends Zoe andGavin. He is also excitedabout going to the retreat

next year to see everyoneagain.

Everybody at the retreatwas so friendly and warm.We now know a differentsense of support andresources are available forour family, and it hasbecome my new-foundpassion to help withfundraising for CCA—tohelp other families knowthat they are not alone.

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someone else “who lookslike them” is priceless. Onefamily saw our PSA duringAmerican Idol anddecided to attend their firstretreat. Their daughterattended the teen andyoung adult session duringthe symposium andinstantly made friends. Sheand her new friends weretogether constantly duringthe rest of the retreat,which is what it’s all about.Throughout the retreat,connections like thesecontinued to be made.

This year, the 2ndAnnual CraniofacialSymposium was held onThursday, prior to retreatactivities. Healthcareprofessionals from theBoston area presented onvarious topics of interest toadults and children of allages. Thanks so much toDr. Stephen Shusterman,Dr. Richard Bruun, LeahLedgewood, NicoleDeMontille, LaurenSnelling, Robert Barron,Dr. Julie Snyder, Dr.Michael Detweiler, Dr.Lauren Mednick, Dr. MarkProctor, Beth Dworetzky,Kara Jackman and Dr.Gary Rogers for freelygiving of their time andexpertise to educate andenlighten our families. AndCCA would also like tothank Mairi Bleakie,Director of Foundationfor Faces of Children, forhelping us organize thesymposium.

The retreat activitiesstarted on Thursday evening

with an ice cream social andan ice breaker. This year thefamilies were broken intogroups and asked to writeon a piece of paper, anevent, such as winning thelottery, making straight A’son a report card, runninginto a bear in the woods,etc., and then everyone hadto place their piece of paperin a bag. Next, each personwould pick a piece of paperfrom the bag and act outthe event they chose, whilethe other people tried toguess what they weredoing. We had peoplejumping up and down,running, dancing, makingcrazy sounds and laughing.Everyone seemed to reallyenjoy themselves, and itwas a great way to get thefamilies mingling!

On Friday after breakfast,we headed out to the NewEngland Aquarium. Familieswere able to see all sorts ofsea creatures, such assharks, sea turtles, jellyfish,penguins and even someseals. We all wore ourretreat T-shirts, to spreadawareness in thecommunity about CCA andcraniofacial differences.Everywhere you looked,there were CCA T-shirts!What a neat experience!Special thanks to Bruce

program director, from page 1

8

Williamson for giving usyet another creative shirt toadd to our collections!

The Friday night eventswere loaded with fun andexcitement! During dinner,“Professor Dan the MagicMan” performed a magicshow. The kids lined thestage and watched his everymove. Some of them evenparticipated in the show.Everyone did a fantastic job!While the younger kidswere enjoying the magicshow, the teens enjoyedsome time away from theirparents, dancing the nightaway during Teen Night. DJGary Leavitt did a fantasticjob getting everyone out onthe dance floor. He startedthe night out by performingsome of his charactervoices, which was shortlyfollowed by line dancing,hula hoop contests and lotsof young, fun and hipsongs. The teens had a blastand I do believe this was

the best teen night yet!Meanwhile, the rest of thegroup was frantically buyingtickets to win their favoritebasket in the fifth annual,family night chance raffle.The baskets were broughtby the families and werefilled with tons of goodiesrelative to their hometowns,cities and states. Onceagain, family night and theraffle in particular, weretons of fun and a hugesuccess!

The group met forbreakfast again on Saturdaymorning and then headedto the pool for the poolparty. After a day of gettingto know each other better,sharing experiences andsupport and just plainhaving fun, everyoneprepared for the dinnerdance—our most popularevent during the retreat.This year we had a specialtreat during the dinner/dance. While everyone was

continued next page �

eating a yummy dinner,CCA adult, ZacharyBordonaro and his dancepartner, Vicki Gilbertwowed the crowd byperforming several beautifulballroom dances. Zachary,who was an attendee of thevery first CCA Retreat atDisney World in 1991, nowattends Tufts University in

Boston, where he and Vickicompete on the BallroomDancing team. Theirdancing was beautiful andreally raised the bar for therest of us. One of the little

girls was sure they were aprince and princess!

Next in line to entertainus were the kids. They tookover the dance floor shortlyafter dinner and stayed outthere the the rest of thenight. Several of our CCAkids, teens, siblings andadults performed dancesand sang songs as well. Theadults slowly started fillingthe dance floor and beforeyou know it, there wasn’tan open spot to be had. Wehad a very lively group thisyear!

The retreat ended with afarewell breakfast on Sundaymorning and the tearsbegan to flow as everyonehad to say goodbye.

The families reallyconnected and manyfriendships were made. And,they continued to formfriendships in the weeksafter by “friending” eachother and posting tons ofphotos on Facebook, andjoining CCA’s Yahoo group.It’s truly amazing! We evenhave several who are writingback and forth.

“We Are Family” is ourtheme song and it says it all!If you have never attended aretreat, I encourage you totry and attend next year.Words can’t describe what alife-changing experience it is.

Please join us for our21st Annual Family Retreatnext June, in Louisville,Kentucky! Registration isofficially open! See you nextyear!

Annie ReevesCCA Program Director

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we went back to thehospital to have the NGtube put back in. The nextnight, Nicholas was fedfrom the Pigeon feederand he choked during thefeeding to the extent ofturning blue. He sucked histongue back to the back ofhis throat and we didn’tknow if we would be ableto save him. This was byfar the scariest experienceto date that we have hadwith him.

The next day, Nicholaschoked again. Dr.Buckmiller’s officerecommended that wecome right away to ACHthrough the ER. At thatpoint, we were lost,thinking, “What are wegoing to do with this babythat can’t eat or breathe?”I went to bed every nightthat week crying, afraidthat Nicholas wouldn’twake up the next day.

This started our month-long stay in Little Rock.Nicholas was diagnosedwith reflux. Also, Dr.Buckmiller told us aboutPierre Robin Sequence(PRS). Nicholas had all ofthe characteristics: Histongue was displaced,causing the feeding andbreathing problems. Hisjaw and chin wereextremely small,contributing to thedisplaced tongue. He haddysphasia, which isuncoordinated or difficultyswallowing.

We were completelyoverwhelmed at this point.

Nicholas then had tohave an NG tube, oxygenand pulse oximeter, and hehad to lay elevated to helpwith the reflux. WhenNicholas spit up (reflux), heaspirated it causing thechoking incidents. It took acouple of weeks ofobservation and testing todetermine that Nicholaswould not be able to eatby mouth and his refluxwas severe enough torequire surgery.

He had surgery to inserta MIC-KEY button, andNissen fundoplication tohelp with the reflux. At thestart of the surgery, uponattempting to intubateNicholas for this procedure,the doctors discovered thatNicholas had a very“difficult” and unstableairway. Therefore, he wasleft on a ventilator foreight days following hissurgery to have the feedingtube placed.

We left ACH with a pulseoximeter and an oxygentank. Once we arrivedhome in Jonesboro, acompany came out and setup an oxygen concentrator.They also provided a foodpump as well as all of ourfeeding and oxygensupplies.

This is not what youexpect when you have anew baby, but that’s whatwe had, so we made thebest of it. We were so

When we finally sawNicholas, he had an NG tubein his nose for feeding and apulse oximeter to monitorhis breathing. I looked in hismouth and, much to mysurprise, there was no palateat all. A small hole? Therewas nothing! We werecompletely overwhelmed,and shocked.

Our pediatrician advised usto stay off the Internet andonly read the informationabout clefts that he broughtus. We were to also followup with Dr. Lisa Buckmillerat Arkansas Children’sHospital (ACH) thatfollowing Monday. We wereadvised to feed Nicholasthrough the NG tube untilseeing Dr. Buckmiller andwere discharged four daysafter he was born.

We followed up with Dr.Buckmiller and left ACHthinking that maybe, wewould be okay, althoughNicholas had one of thelargest clefts ourpediatrician and Dr.Buckmiller had seen. Thiswas only the beginningand we didn’t know howextensive his problemsactually were.

That followingWednesday, we removedthe NG tube completely.Nicholas didn’t do well, so

10continued next page �

nicholas, from page 1

excited to be home withour daughter and son,nothing else mattered!

We made it okay withoutthe need for a tracheotomyas long as Nicholas waspositioned elevated and notlaid flat. Nicholas slept hisentire infant life elevated ina swing, bouncy seat orhigh chair. He never onceslept in his crib.

I started researching hiscondition, trying to findout as much information asI could. I had never heardof PRS. I wanted Nicholasto be an exception for hiscondition and uponresearching, found out thatmost kids with PRS havetracheotomy tubes and/orjaw distraction surgeries;most of them are able toeat normally, however,Nicholas was not.

I quit my job, so that Icould focus strictly onNicholas. I immediatelybegan schedulingdevelopmental, physicaland speech therapies. Atone point, Nicholas wascleared to get therapeuticfeedings, but then thatprivilege was taken awayonce we realized that hewas aspirating.

His first surgery wasabout a week after his firstbirthday when Dr.Buckmiller attempted toclose his entire palate.Luckily, it went well andNicholas didn’t require atracheotomy. He did comeout with his tonguestitched to his lip, to hold itaway from the palate, butthat was removed shortlyafter the surgery.

The recovery was easy forus, because Nicholas wastube fed. We didn’t haveto worry about post-surgical eating anddrinking, medications, etc.However, he did developtwo fistulas (holes) in therepaired palate.

Four months later, wewent for a swallow study,which showed thatNicholas was no longeraspirating. This allowed usto introduce him to babyfoods. From that point on,Nicholas took well toeating.

We continued with alltherapies and severalfollow-up visits to ACH.The feeding tube wasremoved in November2005, and he was nolonger dependent onoxygen for sleeping. We

11

were able to get rid of allof his equipment. That wasa happy day!

Dr. Buckmiller scheduledthe second repair on hispalate near his secondbirthday. The third repaircame about 10 monthslater, along with somework on his sinuses. Hefrequently has sinus troublebecause of the cleft, andhe has had ear tubes sincehe was 10 months old.

For his fourth surgery,Nicholas had his palatelengthened. This wasdetermined by a visit to theACH where they did VPI(VelopharyngealInsufficiency) scope. A tinycamera was insertedthrough Nicholas’ nose toview the very back of hispalate while he madespecific sounds. Dr.Charles Bower performedthe fourth surgery, whichwas a huge success. NowNicholas can make pressureconsonant sounds such as“p” and “b.”

Since then we’vefollowed up with Dr. Bowerevery six months, along

with a visit to the ACHspeech department. Theyhave been so pleased withNicholas’ progress. He wasreceiving speech therapythree to four times a week.Now he gets speechlessons once a week afterschool. By the way,Nicholas will enter firstgrade in the fall, but healready reads and writesbeyond his level.

You really can’t tell justfrom looking at Nicholaseverything that he’s gonethrough. He speaks asnormally as any other six-year-old child, just a littlemore nasally. He’s madesuch tremendous progressso far with the help of theamazing medical team atArkansas Children’sHospital and our localpediatrician.

I believe that Nicholas isan exception for thecondition he has, and Ican’t believe, looking backat pictures, how far he hascome. He truly is our littlemiracle, showing what lotsof hard work and LOTS ofprayer will do!

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miranda Larkin of Ocala, Florida was selected bythe Miracle Network at Shands to tour the

University of Florida’s Gators football weight room, meetCoach Myer as well as several of the Gator players. Thenshe walked out with the Gators through the tunnel andonto the football field for the Orange and Blue game.They even announced her name on the loudspeaker! Afterall this excitement, she performed IMAGINE on stage toabout 2000 people in the O’Connell center! How cool!

stephen Wright of San Francisco is the recipient of aVolunteer Leave from Wells Fargo, which lets him

begin a 10-week project supporting CCA while stillreceiving his regular Wells Fargo pay and benefits. Wright,a treasury service associate with Wells Fargo’s WholesaleBanking group, is one of 30 Wells Fargo team membersacross the company to receive the award this year.

Stephen has volunteered with CCA for 17 years, serveson the board of directors and chairs the organization’saudit committee. He plans to use his 12 years of bankingexperience and MBA with an emphasis in marketing tocreate marketing and financial plans for CCA.

Thank you for choosing CCA for this project, Stephen!

elizabeth Moulton,mother to CCA adult

John Moulton, had a veryspecial day of pampering.The Masonic Home had aspecial Mother’s Day

celebration for all of the ladies living there. They had abeautician come in and do hair and make-up the Fridaybefore Mother’s Day. Then they took “Glamour Shots”and had a display of all of them. One of the ladies said “Ifeel like Mrs. Grandmother America.” What a special treatfor a special group of women! Elizabeth, you lookbeautiful!

good news!

Kate Rogers and herbaby brother, BenjaminLee Rogers, born on5.19.10.

Sophia Jane Weaver andher baby brother,Alexander Cole Weaver,born on 7.8.10.

big ccasisters!

to others?’ So then, I bringjoy. I’m not a hero but Ithink I’m a winner!” He’snot a wealthy man,money-wise, yet he’s quickto fulfill every CCAbirthday wish on ourFacebook site! He is a verywealthy man if you countfriends! Thanks Mario!

t his issue we introduceour new CCA friend

from abroad, MarioAdamo. Mario has beensupporting CCA kids,adults and families for thepast few years now.

He gives online, throughFacebook, in person, forfundraisers, on Firstgiving,raffles, donations,webstore … you name it, if

it supports CCA kids,Mario is all for it!

He first found Children’sCraniofacial Associationand ccakids.org on theInternet after striking up awonderful relationshipabout eight years ago withTeeter Sears and the Searsfamily through “Teeter’sPage” and ApertInternational. He says hehad “a calling as a giftfrom God to find outabout and do somethingmore for rare syndromes”and he seems to beconcentrating on

“craniofacial” andthe like.

Mario is apostman fromZurich, Switzerland.Two years ago, hewent along on the ApertInternational Cruise, andthis summer he joined ourfamilies in Boston for theAnnual Family Retreat.

In his own words, Mariowants to do good forothers and spread love andcaring with an open heart.“In The Bucket List, theysay, ‘Have you found joy?’and ‘Have you brought joy

donori n t h e s p o t l i g h t

children’s craniofacial association is on the road thanksto road scholar transport

t hanks to the generous activities of Jim Barrett,founder of Road Scholar Transport, you may see a

truck rolling down the road raising awareness for CCA!Road Scholar is running the 10 Million Mile AwarenessProgram and has chosen CCA as one of its charities.

The project started when Jim was introduced to CCAthrough a co-worker of Marlene Deily, grandmother toCCA kid Jeremy Dale. After hearing about the challengesthat CCA kids must face, Jim was immediately energizedto add CCA to his fleet of rolling billboards. CCA’s ownRobin Williamson collaborated with employees at RoadScholar to design the artwork on the truck and RoadScholar went to work on adding the CCA truck to its fleet.

Through the 10 Million Mile Awareness Program, RoadScholar customers can “sponsor” the CCA truck byutilizing Road Scholar Transport for their freight shippingneeds. This helps to get the truck out on the road andbring awareness to all the communities where it travels. Inaddition to CCA, Road Scholar generously promotesawareness for 11 other charities.

With September being Craniofacial Acceptance Month,it is a great time to get this truck out on the road. If youare involved with freight shipping, or know someone whois, call Road Scholar Transport and request the CCA truckfor your shipping needs.

You can find contact information for Road Scholar atwww.roadscholar.com.

13

After attending aChildren’s CraniofacialAssociation retreat as atoddler, Emily got an inviteto appear on a nationaltalk show with Cher. Thesinger had become activewith the association afterstarring in Mask, a movieabout a boy with facialdifferences.

Cher pointed out kidslike Emily are just like otheryoungsters. As if to proveher right, Emily set out onan exploratory trek acrossthe stage and thenplopped on Cher’s lap.

That was one early signof Emily’s fearlessness. At18 months, she startedpulling the tracheotomytube out of her neck as aform of protest. That’s howher parents figured out shedidn’t need it anymore.

Before jaw surgery atage four, Emily mostlycommunicated throughsign language. Post-recovery, she amazedeveryone with hersophisticated vocabulary. Ingrade school, she insistedher mom invent extrahomework for her.

Treacher Collins can be abit of a drag, Emilyconcedes. In her earlyteens, she had troublebreathing in her sleep andbrought a sleep apneamachine to sleepovers.After surgeries, her dad,

Dan, goes on a liquid dietwith her.

Emily, who wears ahearing aid, has to focus tofollow classroom lectures.Her teachers used to wearmics, but she crackeddown on that herfreshman year. “I hatehaving people do thingsespecially for me. I can’tstand that,” she said.

But the disorder hasn’tslowed Emily down; she’sher class’s salutatorian.

“You want your kids todo the best they can do,”says mom Denise. “Emilyhas always put 100 percentin everything she does.”

Emily recalls the tightnessin her stomach as she wasabout to first step on stagebefore an unfamiliaraudience. It was a sixth-grade musical calledShowstoppers.

She’s graced the stagemany times since. PatrickKasper, a Fargochoreographer, tapped herto appear in a hip-hopworkout video in hersignature pink tennisshoes.

“You are always nervousbefore you go on,” shesays, “but then you get onstage, and you see all thesepeople watching with somuch excitement.”

Emily’s traveled to Hawaiiwith the Moorhead Highorchestra and to Scotlandwith the school’s

production of High SchoolMusical. The show gaveEmily her toughest stagetrial: playing an “emo” girl.

“You have to be sad andmad, and that’s completelythe opposite of how I am,”Emily explains.

To coax out thecharacter, Emily conjuredthe pain of post-surgeryrecovery. She dyed herblond hair black, wentheavy on the black eyelinerand shuffled across thestage in a cloud of teenangst.

“Emily auditionsbeautifully, and she’s afierce performer,” saysdirector Rebecca Meyer-Larson. “We don’t noticeshe looks different frommost girls. All we see isbeauty and joy andconfidence.”

Meanwhile, Emily hascultivated a passion foryoungsters with medicalstruggles. She’s been baby-sitting a girl with cerebralpalsy. She signed up tovolunteer in the MeritCareNICU, where nurses stillremember her and herunfailingly upbeat parents.

After her 11th surgery inJune, Emily starts atConcordia College. Sheplans to go into nursing.

“She has so many greatachievements, but we aremost proud of who she is,”says Denise. “She’s alwayshappy and positive.”

14

emily Paulson’s lifestarted with a stint in

intensive care, a string ofsurgeries and a nap onsinger Cher’s lap.

She’s since endured moresurgeries, hours of therapyand the occasional pityingstare. But Emily, 18, hasrefused to shirk attention.She’s performed on amusical theater stageweeks after surgery. She’splayed the cello for acrowd at Pearl Harbor.She’s appeared in a fitnessvideo.

Last year, the MoorheadHigh School seniorreturned to volunteer atFargo MeritCare’s NeonatalIntensive Care Unit, whereshe spent weeks as anewborn. She’s proof afeisty spirit trumps thesnags a rare geneticdisorder threw at her.

“It hasn’t stopped mefrom doing anything,”Emily says.

Emily was born withTreacher Collins syndrome,a congenital disorder onein 10,000 babies has.Infants with the conditionhave underdeveloped facialbones and difficultiesspeaking, swallowing andhearing. During her stay atthe NICU, doctors insertedtubes in Emily’s airway andstomach to help herbreathe and eat.

emily: a rare condition doesn’t slow down thiscollege-bound studentBy: Mila Koumpilova, INFORUM

Emily Paulson’s life started with a stint in intensive care, a string of surgeries and a nap on Cher’s lap.

more good news

15

cca 20th anniversaryt-shirts

our limited edition20th Anniversary

Logo T-shirts are stillavailable for purchase,now on sale for just $15each, plus shipping.

We still have thefollowing sizes available:Adult sizes, S, M, 2XL,and 3XL. And we’re happy to announce youth sizesare still available: XS (2-4), S (6-8),M (10-12), (L youth, order S adult).

H

HH H

HH

H

20 Years of Giving Hope1 9 8 9 - 2 0 0 9

goodsearch & goodshopEvery time you shop online at your favoritestores you could be saving money and earning adonation for Children’s Craniofacial Association.

our new toolbar, developed by GoodSearch &GoodShop, takes just a few seconds to download.

More than 1,300 top stores including Apple, Best Buy,Gap, PetSmart, and Staples are pitching in and willdonate a percentage of each sale to our organization.There’s no extra cost to you and you may even save moneyas the merchants are providing us thousands of money-saving coupons!

The GoodSearch toolbar also includes a search boxwhich is powered by Yahoo! Each time you search theweb, about a penny is donated to us!

There’s no easier way to help CCA. Please spread theword! Here’s a link to the toolbar for more information:http://www.goodsearch.com/toolbar/childrens-craniofacial-association-cca

(Firefox seems to be the easiest browser to use.)

Giving Back

cCA is proud of our cause-related marketing alliancewith Permission products, a line of men’s skin care.

“Permission formulas help you face the world with newconfidence, and you’ll be helping others do the same. Aportion of proceeds from each product go to benefitChildren’s Craniofacial Association…”

www.permissionskincare.com

“Beyond the Face is a Heart” wristbandsThe great response to our CCA bracelets has prompted us

to sell them throughout the year!

Bracelets are $1 each

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 JillJPatterson@ccakids.com • 800.535.3643

bracelet sales continue!

For a complete list of ourprograms and services, visit:

www.ccakids.org/prg.asp

“

financial assistance

do you travel to receive quality

medical care? If you do, and

need financial help, CCA has a

financial assistance program that will

help with food, travel and/or lodging.

Call CCA for an application at

800.535.3643. All we ask is that you

apply at least four to six weeks

prior to your next appointment.

16

new cca webstore offerings

$15 each plus shipping

Millifiori glass heartNo two alike!

Leather w/CCA logo tag

“Swarovski-type” genuine Austrian crystalstretch bracelets with stainless steel CCA logo tag

Stainless steel w/ braided leather; round, heart or dogtag style;“Beyond the Face Is a Heart” on reverse

Alexandrite“Purple”

Apricot “Orange” Chrysolite “Lime”

Gold Beryl “Teal” Light Sapphire“Royal”

Multi “LimitedEdition” forSeptember

“

our son Sullivan is nineyears old and just

underwent his fourteenthsurgery. In the past we wereable to have his proceduredone locally; however, thatwas not the case for his lastone, nor for his next one.

We live in Iowa and were able to get to Texas with thehelp of CCA. Without their help, I am not sure how wecould have done it.

Their help did not stop with just financial support. Theywere also kind enough to come and offer us emotionalsupport during his surgery. With our family so far awayand our son in surgery, they were exactly what weneeded at that moment!Thank you so much CCA! You are an amazing

organization, and we will always be grateful for yourhelp!

Maylan, Amy, Hannah, Sullivan and Jonas Thomas

testimonial

mathematics instructor at Flower Mound High Schoolin Flower Mound, TX, Judy Kemler, is also

grandmother to CCA kid, Luke Bowen. Last May, she gother faculty at school to hold a Jammin’ Jeans Week forLuke Bowen which brought in almost $1,000 for CCA!Special thanks to school principal, Mr. Paul Moon forallowing the effort to take place and to everyone whoparticipated! Judy also plans to get the student bodyinvolved for September’s observance of CraniofacialAcceptance Month! Go Judy!

jammin’ jeans weekfundraising news

t he “ChanceRaffle” held at

the Annual FamilyRetreat in Bostonwas anothersmashing success,raising about$1,200, $5 at a time,thanks to CCA familyparticipation on bothends! Families firstbrought baskets andgoodies from their hometowns and states to raffle andthen purchased tickets in hopes of winning their favorites.

Another year of fabulous items, nail biting and funensued as Board Chair / CCA dad, George Daleannounced winning names drawn by “Bill,” the wait staffmanager at the Hyatt, where the festivities were held. Theonly tense moment was when Program Director, AnnieReeves attempted to board her Boston flight with a hugeNew York Yankees basket. She was held up for a momentat security but it was all in fun as they let her to walk withit to her gate at her own risk! Hope the rest of you madeit home okay with your goodies! Annie?

boston retreatchance raffle

$185,000

2010 FAMILY FUNDRAISERGOAL THERMOMETER

100%

90%

70%

50%

30%

10%

80%

60%

40%

20%

Judy Kemler dropped off a check at CCA from her Jammin’ Jeanseffort at work, in honor of grandson, Luke.

thinking aboutgetting…DirecTV ~ Clear ~ Wild Blue ~ADT Service?

use the promo code 46063, andyou will get a great deal and

help Children’s CraniofacialAssociation at the same time! Thepromo code will get you 50% off forone full year—packages starting at$29.99 month. Call the CCA officefor coupons you can use for lots ofspecial offers.

cca mugshot

Rachael Morrissey has left the building!Rachael & family visited the CCA office andposed for a post-operative mug shot! 17

Gifts fromIndividuals

CCA Friends($100 +)Stephanie & Shayne Anderson for Henry’s

MarchAnonymousJill AutielloErik BaumannNorma BiegelsenJulia & Robert BoyceMike & MaryAnn BudishRose Burks for Henry’s MarchBeverly & Jim ButeraJulie Byerlein for Henry’s MarchLaurinda CalongneLarry CarpenterLisa Carter for Henry’s MarchJudith A. ClonanGeorge Dale, Sr.Randy DaleRobert & Nan Davis for Little Fire Big HeartMark & Lania DeerLouis DominguezJoan DornierRene DornierSue DunnKim Duyst for Henry’s MarchPeg ElfersJess & Alice EvansRegina FarrellJarret FinoRoland & Dottie FreemanLori GordonReynold GravinaYandy & Roanna GreenMartin GruppMary Lib GuercioBob & Paula GuzzoJ. James & Arleen HeirtyAndrea HorschDarlene & William HunterCharles IngrumDeborah JettElizabeth W. JonesMelissa & Richard Jones for Henry’s MarchStephan & Jennifer Keim for Henry’s MarchAndrew KernMelanie KoscickEsther KriegerAdam LamarRoger & Carolyn LambT. Shaun Larsen for Henry’s MarchEllen LomonocoJonathan LovettMelanie Machado for Henry’s MarchGerald MassimeiWanda McDonaldPenny McKeeAnne MilneckTina MooreLorraine Mote for Henry’s March

David & Paula Mullins for Little Fire BigHeart

James Muslow, Jr.Beverly OgdenScott PaynterColleen & Michael Phelps for Henry’s

MarchFreda PhiferGloria & Joseph Pike for Little Fire Big

HeartRay PoindexterPaul PokladnikRishad RajabaliAndrea Richard, D.O.Dr. Milton Richards for Henry’s MarchJere RobertsonReid RosenmayerRobert RutemillerRandolph SchaeferWarren & Donald SchmidtJoanne SchraederDavid SharpeCharlene SmithCheryl SmithChris StaggsChase StehrBradley ThompsonGary Tindle for Henry’s MarchJennifer Tinney for Henry’s MarchKevin & Jennifer TrapaniGary UttkeJonathan WagnerJohn Rob & Mary Walker for Luke Bowen’s

Jammin’ Jeans WeekMrs. W.W.WatkinsNanette WhitsonSteven & Mary WilhelmMyrna & Ronald Zaccagnino

CCA Extended Family($500 +)Martha BrownFred and Judi FreemanRob Hough for Henry’s MarchEric LogisAnn & Don Lucas for Be Brody’s AngelJim O’SullivanDan & Denise PaulsonPaul PokladnikCourtney VincentMartha & Michael WillsonKenneth Wilson

CCA Sponsor($1,000 +)AnonymousWalter BettingerJ.K. Hertz

18

*Listed are monetary donations of $100 or more through 2ndquarter, 2010. We are extremely grateful for these and all otherfees, purchases, fundraisers and in-kind donations not recordedhere. (Note: For space consideration, 2010 donations under $100,CCA “Supporters,” will only be published in our year-end list.Cumulative $100+ donations and all In honor or In Memorydedications will continue to be published in each quarterly issue.)

We do our best to accurately recognize donors. If you notice anerror, please let us know.

CFC (Combined Federal Campaign, federal-employee giving)

donors, january 1 –june 30, 2010*

18

calendar of eventsdate event contactSep 1, 2010 Beginning day of 6th Annual

Craniofacial Acceptance Month

Sep 2010 3rd Annual Ryan’s Road ngulich@yahoo.comBig Flats, NY

Sep 5, 2010 Raegan’s Rally/Walk for CCA Ashley DaughertyDeerasic Park, 3 PM adaugherty@mvesc.k12.oh.usCambridge, OH

Sep 11, 2010 4th Annual Seth’s Stride mythreekids@neo.rr.comfor CCA Stacy SwihartCanton, OH www.firstgiving.com/sethsstride

Sep 11, 2010 3rd Annual National Picnic Day areeves@ccakids.comfor Craniofacial Acceptance Month www.ccakids.orgSandy Lake Amusement Park 214.570.909910:00 AM – 1:00 PM 800.535.3643Carrollton, TX

Hilton State Park shwmz@comcast.net11:00 AMDover Point, NH

Sep 19, 2010 Smiling Through the Mask – wendelynyvonne@hotmail.comA dinner to benefit CCARestaurant 1620Little Rock, AR

Sep 20, 2010 Jylian’s Links of Love JPatterson@ccakids.comGolf Tournament www.ccakids.orgThe Golf Club at The Resort on 800.535.3643Eagle MountainFort Worth, TX

Sep 25, 2010 Little Fire, Big Heart TarynSkees@gmail.comDinner/Auction www.littlefirebigheart.comMelwood Art CenterLouisville, KY

Sep 25, 2010 Rock’n Bowl with Kayla Smith msmith@nwbcorp.comRiverside Lanes 814.723.1221Warren, PA

Oct 2, 2010 6th Annual Friends of Jeremy gdale@stny.rr.comGolf Tournament www.friendsofjeremy.comCorning Country ClubCorning, NY

Oct 10, 2010 3rd Annual Chocolate Festival ChefRick2@aol.comfor CCAAventura MallAventura, FL

Nov 7, 2010 BaseBowl JPatterson@ccakids.comJorge Posada Foundation www.ccakids.org300 New York at Chelsea Piers 214.570.909912 PM – 4 PM 800.535.3643

Dec 3, 2010 Center for Courageous Kids info@courageouskids.orgFamily Retreat www.courageouskids.orgScottsville, KY 270.618.2900

Dec 11, 2010 CCA Holiday Party–Dallas areeves@ccakid.comSouthfork Ranch 214.570.9099Parker, TX 800.535.364310 AM – Noon

Dec 2010 CCA Holiday Party–Midwest JPatterson@ccakids.comBrat Stop/Parkway Chateau 214.570.9099Kenosha, WI 800.535.3643

CCA Benefactor($5,000 +)Bill Mecklenburg & Christine Condino

Mecklenburg

CCA Guardian($10,000 +)Jean Pond Bequest

Memorials /In-Honor GiftsAmy Abernathy, in honor of Char’s birthdayAnonymous, in honor of the Clay familyAnonymous, in memory of Rick DornierAnonymous, in honor of John GormanAnonymous, in honor of Bob & Julie

SanchezAnonymous, in honor of Logan TraegerMonica Arcement, in memory of Rick

DornierDana Archambeau, in memory of Rick

DornierMelissa Asevedo, in memory of Rick

DornierJill Autiello, in honor of Megan CroninErin Basden, in honor of John GormanAgnes Beckett, in honor of Casey Deakins’

BirthdayConstance Betts, in memory of Rick DornierJudith Black, in honor of Max’s recoveryLisa & Michael Bock, in memory of Rick

DornierRandy & Carol Bonnecaze, in memory of

Rick DornierJulia & Robert Boyce, in memory of Rick

DornierJanna Brewer, in honor of Char Smith’s

birthdayRichard Buchholz & Keiko Teranishi, in

memory of Rick DornierRichard & Mary Buchholz, in memory of

Rick DornierHeather Bull, in memory of Rick DornierLaurinda Calongne, in memory of Rick

DornierLarry Carpenter, in honor of Cher’s birthdayJeffrey Castor, in honor of Jeremy DaleSheila Circello, in memory of Rick DornierDadami Family Trust, in memory of

Rosaleen EganMartha Dartt, “in memory of little Rick

Dornier with love”Casey Deakins, to commemorate her

birthdayJoan Dornier, in memory of Rick DornierMelisse Dornier, in memory of Rick DornierRene Dornier, in memory of Rick DornierRene Dornier, in memory of Rick Dornier,

from the Dornier’s in Klein, TXJames & Betty Doyle, in memory of Shelly

DoyleSue Dunn, in memory of Rick DornierEnglish Family Trust, in memory of

Rosaleen EganRegina Farrell, in memory of Rick DornierFox Rothschild LLP in memory of co-worker,

Herb StevensGolden Girls, LLC, in honor of Seth Swihart

by Michelle CollanerDoug Goode, in memory of Rick DornierRoberta Graham, in honor of Sara

StephensMary Lib Guercio, in memory of Rick

DornierBob & Paula Guzzo, in memory of Gail

RookBob & Paula Guzzo, in memory of Joan

VeazeyLinda Harte, in memory of Rosaleen Kane

Egan

Kimberly Haycraft, on behalf of the Greerfamily

Jim & Arleen Heirty, in memory of JordanAdamowicz

Jim & Arleen Heirty, in memory of RobertBoehmke

Jim & Arleen Heirty, in memory of GeorgeBouzarelos

Jim & Arleen Heirty, in memory of LesKopecky

J.K.Hertz, in honor of Morgan MecklenburgAndrea Horsch, in memory of John

HaycraftKathy Hubbard, in honor of Char Smith’s

birthdayDeborah Jett, in memory of Rosaleen EganJennifer Jones, in memory of Rick DornierSharleen & Ray Juneau, in memory of Rick

DornierBarbara Kelly, in memory of Rick DornierAndrew Kern, in memory of Rick DornierNanine Kharey, in memory of Rick DornierMay Klein, in memory of Rick DornierJo Koelz, in memory of Rick DornierAdam Lamar, on behalf of the employees

of Delray Lighting, in memory of JerryFeig

Adam Lamar, in memory of his “belovedfather, Roy Nickola Lamar

& blessed Patti Welch who went to theLord at the age of 9”

Cheryl Landry, in memory of Rick DornierJoseph Logan, in memory of Rick DornierEllen Lomonoco, on behalf of K.C. & John

HaycraftDuane Long, in honor of Casey DeakinsMr. & Mrs. Lawson Lott, Jr., in memory of

Rick DornierAnn & Don Lucas, to honor their 45th

wedding anniversaryMarcia Mackay, in memory of Rick DornierRonald Magee, in memory of Rick DornierKristen Manning, in memory of Rick

DornierDarryl & Kathleen McCauley, in memory of

Dorothy NesterPenny McKee, in memory of Rick DornierChristine Medici, in memory of Rick

DornierBrandy Meierhofer, in honor of John

GormanDolores Middleton, in memory of Rick

DornierAnne Milneck, in memory of Rick DornierRonald Miller, in memory of Rick DornierJane Monell, in memory of Suzie MurrayDavid Monett, in memory of Rick DornierLeanne Monroe, in memory of Rick DornierTina Moore, in memory of Rick DornierAlison Morrissey, in honor of Char Smith’s

birthdayErica Mossholder, in honor of Char Smith’s

birthdayFredrick Muncy, in memory of Rick DornierJames Muslow, Jr., in honor of Sam GreerJeffrey Nicholson, in memory of Rick

DornierBeverly Ogden, in memory of Rick DornierStephan Orban, Joel Evans, Bob West, Jake

& Joe Henson, in honor of Avery LytleJill Patterson, in honor of Casey Deakins’

birthdayJill Patterson, in honor of Char Smith’s

birthdayScott Paynter, in memory of Rick DornierJana Peace, in honor of Char Smith’s

birthdayCynthia Perkins, in memory of Rick DornierRay Poindexter, in loving memory of Ann

PoindexterElizabeth Prince, in memory of Dan PrinceCaryl Rabedeaux, in memory of Rosaleen

EganTammy Raines, in memory of Rick Dornier

Annie Reeves, in honor of Char Smith’sbirthday

Michael Rice, in honor of JoAnn KopshinskyRandall Riddick, in memory of Rick DornierLaura Roark, in memory of Rick DornierJere Robertson, in honor of Jane Monell’s

BirthdayLeslie Robidoux, in memory of Rick DornierMarie Rourke, in memory of Rick DornierRobert Rutemiller, in honor of Elia’s

birthdayRobert Rutemiller, in honor of wife, Maura’s

birthdayTricia Sanchez, in memory of Rick DornierWarren & Donald Schmidt, in honor of

Jeremy DaleJoanne Schraeder, in honor of Rosaleen

EganDavid Sharpe, in memory of Richard ‘Rick’

DornierPatricia Sharpe, in memory of Rick DornierAmanda Smith, in honor of Char Smith’s

birthdayCharlene Smith, in honor of Casey Deakins’

birthdayCharlene Smith, in honor of Kathy

Hubbard’s birthdaySuzanne Smith, in memory of Rick DornierTracey Smith, in honor of Char Smith’s

birthdayNathalie Sousa, in memory of Rick DornierWilliam & Nancy Suwalski, in memory of

Jerry MandelErik Swanson, in memory of Rick DornierJune Sweeney, in memory of Antoine

AparicioBeatrice & Eric Tamichi, in memory of

Rosaleen EganRichard Thomas, in honor of Char Smith’s

birthdayArthur & Gail Thomson, in memory of Rick

DornierNeva Tomlinson, in memory of Jack

GreesonTegan Treadaway, in memory of Rick

DornierMichael & Mary Tuerck, in memory of Rick

DornierLynda Vince, in memory of Rick DornierLeona Vitolo, in honor of Zach BordonaroJonathan Wagner, in memory of Rick

DornierNanette Whitson, in memory of Rosaleen

Brigid Kane EganJeffrey Wild, in memory of Rick DornierSteven & Mary Wilhelm, in memory of Rick

DornierJ.B. & Cynthia Wills, in honor of Reed WillsMartha & Michael Willson, in honor of

Avery LytleFrank Wilson, in memory of Rick DornierJean Zabady, in honor of Jeremy DaleCynthia Zumstein, in memory of Rick

Dornier

Jilly Bean Bunch(Donations to provide Financial

Assistance to Families)

Corporate /Foundation Gifts

CCA Corporate /Foundation Friends(up to $1,000)AT&T (United Way Employee Giving)Active Network (registrar for Henry’s

March)Amalia’s Cocina, Inc. for Henry’s MarchAmerican Express (Employee Giving)

19

American Express Charitable Fund(matched gifts of Janell Nelson)

Arvest for Wendelyn’s Course of DreamsBank of America (United Way Campaign

Employee Giving)Blue Bell Creameries.L.P. for Wendelyn’s

Course of DreamsChildren’s Medical Charities (CFC)Community Foundation of N. Colorado by

Brinkman Partners FundCostco Wholesale #782 for Henry’s MarchCreative Growth Counseling & CoachingDelray Lighting Employees by Adam LamarE&J Gallo Winery for Henry’s MarchEmerson Climate Technologies

(recommended by Stephen Orban)Express Income TaxFifth Third Bank for Little First Big HeartFlorshein Brothers Foundation for Henry’s

MarchFunding Factory (Ink/cell recycle rebates)Golden Girls, LLCJackTheDonkey.com by David KatzL&G Restaurant for Henry’s MarchLee Law OfficesMetal Parts & Equipment Co.Modesto Kitchen and Bath for Henry’s

MarchMorgan Stanley Cybergrants, Inc.

(Employee Giving)Permission, Inc.Pfizer (United Way Campaign Employee

Giving)Prudential Foundation (Employee/Matching

Gifts)Reed Realty for Henry’s MarchRodig Smile Design for Henry’s MarchRolling F Credit Union for Henry’s MarchEdwin Smith & Sons for Henry’s MarchSenior Respiratory Solutions, Inc. for

Wendelyn’s Course of DreamsSutter Central Valley Hospital for Henry’s

MarchTruist (Employee Giving Management

Fund)Turlock Fitness & Racket Club for Henry’s

MarchTurlock Poker Room for Henry’s MarchUnited Way of California,Capital Region

(Donor-Directed Donations)United Way, Cedar Valley (Donor-Directed

Donations)United Way of Central Maryland (Donor-

Directed Donations)United Way of Greater Milwaukee (Donor-

Directed Donations)United Way of Long Island (Donor-Directed

Donations)United Way Mile High (Donor-Directed

Donations)United Way New York City (Donor-Directed

Donations)United Way of Tucson & Southern Arizona

(Donor-Directed Donations)United Way of Wyoming Valley (Donor-

Directed Donations)Valley Lexus for Henry’s MarchWellpoint Foundation Funds Management

(Employee Giving)Wells Fargo (Employee Giving)

CCA Corporate /Foundation Sponsors($1,000-$5,000)A grant from the Brotman FoundationCharity Motors (CARS-Charitable Auto

ResourceS, auto donation proceeds)Foster Poultry Farms for Henry’s MarchGreat Coasters International, Inc. for Little

Fire, Big HeartHonda Financial Services for Little Fire Big

Heart

The Redwoods Group (Matched Gift of BillMecklenburg)

Triangle Foundation (Donor Advised Fund)A grant from the Robert Tucker Hayes

FoundationSunTrust BankVivo Brothers, Inc.

CCA Corporate /Foundation Partners($5,000-$10,000)Fox Rothschild LLP, Attorneys At Law, 15

Offices Nationwide, MemorialDonations

United Way of the Greater Triangle(Directed Donations)

CCA Corporate /Foundation Patrons($10,000 or more)Grant(s) from the Jorge Posada Foundation

FundraisingEvents

Up to $1,000Cash Can / Kim Rogers, CCA VolunteerJanis Cazare’s Firstgiving PageInk / Cell Recycle for CCA / CCA Families &

FriendsJewelry Sale / Peggy McDannelJammin’ Jeans Week in honor of Luke

Bowen for CCA / Judith Kemler, CCAVolunteer

Lily’s Dinner for CCA / Firstgiving Page/Tosha Walker, CCA Volunteer

$1,000-$5,000CCA 20th Annual Family Retreat “Chance

Raffle” proceeds / CCA RetreatAttendee Families

Clear Lake 8 Ball / Raffle & DonationCollection for CCA in honor of NatalieWardlaw

Little Fire, Big Heart Dinner Auction forCCA / Taryn Skees, CCA Volunteer

Wendelyn’s Course of Dreams GolfTournament / Wendelyn Osborne, CCAVolunteer

$5,000 or more

$10,000 or more

$20,000 or more3rd Annual Henry’s March for CCA /

Johnson Family; Rachel, TJ, Lauren,Henry

Honorary Chairperson:Cher

Board of Directors:George Dale, CHAIR, Corning, NYTony Davis, DMD, Tuscaloosa, ALDede Dankelson, Highland, MITate Gorman, Dallas, TXDonna Gossett, Cullman, ALPaula Guzzo, Evansville, INJanis Macut, Harrisburg, PABill Mecklenburg, Mission Viejo, CAErica Mossholder, Tuscaloosa, ALRose Seitz, Youngstown, OHRobin Williamson, Carrollton, TXStephen Wright, San Francisco, CA

Medical Advisory Board:Jeffrey Fearon, MD, CHIEF ADVISOR

CCA Network Editor:Kelly Liszt

CCA Network Design andProduction:

Robin Williamson, WilliamsonCreative Services, Inc.

Executive Director:Charlene Smith

Program Director:Annie Reeves

Development Director:Jill Patterson

Administrative Coordinator:Jana Peace

VOICE 214.570.9099FAX 214.570.8811TOLL-FREE 800.535.3643URL CCAkids.com or CCAkids.org

The views and opinions expressedin this newsletter are not necessarilythose of CCA.

If you no longer wish to receive thisnewsletter, please send an email toAReeves@CCAKids.com or mail thelabel to the CCA office and ask that itbe removed from the mailing list.

If you know of someone whowould like to be placed on themailing list please forward to ustheir name and address.

cCA was honored to have a newvolunteer join our community this year

showering us with prayer pocket pillowsfor our families. Laurie Haese is a wifeand mother who considers herself blessedto have the time and talent to make such aunique gift that touches families who maybe experiencing a variety of circumstances.

Laurie put her ideas into action when herdaughter Hannah went off to college in2006. It started out with cross pillows, andthe next year she expanded her efforts withthe prayer pocket pillow. She wanted tofind a way to give a gift that would liftpeople up and let them know she waspraying for them. She loves hearing howher customers have used them in so manycreative ways and how it has encouragedfriends and families.

3cheersf o r v o l u n t e e r s !

When Laurie heardabout CCA, shevolunteered to donatepillows for familiesthat have children inthe hospital. Shecarefully consideredeach piece of fabricfor the pillows. Wecall her our “pillowangel.”

We asked if it might be possible for herto make them for the CCA Family Retreat.She asked how many families and didn’teven bat an eye when she heard it wouldbe about 115 pillows. She said “I loveddoing the ones for the CCA retreat andhope they felt the love and prayers thatwent into making each one.”

We think they definitely felt the love,Laurie, and we are so thankful and lucky to

have you be apart of ourfamily ofvolunteers.

NONPROFIT ORGU.S. POSTAGE

PAIDRICHARDSON, TXPERMIT NO. 128

children’s craniofacial association13140 Coit Road, Suite 517 • Dallas, TX 75240