messagefrom theexecutivedirector

the annual planningmeetings for the CCA

Board of Directors andstaff are always a veryproductive time, and thispast January’s meeting wasno exception. We took anin-depth look at theaccomplishments from2007 and used thatinformation to developgoals and objectives for2008 and beyond.Some of the highlights

from 2007 include:• 17th Annual FamilyRetreat. 78 families from32 states and Canadaattended the retreat inSalt Lake City, UT.

ccanetwork

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

newsletter of the children’s craniofacial association Cher — honorary chairperson spring 2008

see chairman, page 9

fourteen years ago, Joe and I were expecting our firstchild. We had planned the pregnancy, and we were so

thrilled about bringing our child into the world. We wentto all the child-bearing classes, read many books, spentmonths discussing names, prepared the nursery and did allthe glorious things expectant parents do.I thought about the birth over and over in my mind, like

a Hollywood movie, excited and nervous, replaying amillion times what it would feel like to hold my brand-newbaby for the first time.Although it was a few weeks early, the night finally

came and I knew my body was ready. After a long night oflabor, our OB/GYN came in and said, “It’s time.” The roomwas filled with excitement, and I couldn’t believe I wouldsoon have a baby.

see rachel, page 10

rachel’s storyBy Alison Morrissey

insidecca kid

olivia sanborn . . . . . . . . . . 2

cca teen

derrick wolf . . . . . . . . . . . . 3

cca supersib

chase tomanski . . . . . . . . . 4

heroes for hope gala . . . . . 5

craniosynostosis. . . . . . . . . 6

henry’s march . . . . . . . . . . 8

good news . . . . . . . . . 9,12

calendar of events. . . . . . 11

how to raise funds . . . . . 12

fundraising news. . . . . . . 14

donors . . . . . . . . . . . . . . 15

3 cheers . . . . . . . . . . . . . 16

We wish to thank Bally’s,

a corporate sponsor, for helping

to fund the CCANetwork.

Please consider a corporate

sponsorship. Contact Jill

Gorecki, JGorecki@CCAKids.com

olivia Sanborn is five

years old and lives in

Richmond, VT. She attends

preschool, where she loves

to play with her good

friends, Molly and Alexis.

And while at school, she

also enjoys painting and

playing in the imagination

corner, where she pretends

to be a waitress and cashier.

Olivia is looking forward to

going to kindergarten this

fall. She even knows who

she’s going to be for

Halloween — Tinkerbell.

When she’s not in school,

Olivia plays games on the

computer and spends time

with her older sister,

Amelia, who is in the first

grade. Olivia likes to watch

anything on the Disney

Channel, and her favorite

movies are “Alvin and the

Chipmunks” and “Snow

Buddies.” Her favorite song

at the moment is “Best of

Both Worlds,” by Miley

Cyrus.

Olivia likes outdoor

sports. She went skiing for

the very first time and

found she was really good

at it. She also is a very good

ice skater. Olivia likes

playing soccer and is part

of an adaptive league.

She and her family have

attended the last three CCA

retreats and are hoping to

attend this year’s retreat in

Myrtle Beach, SC. She’s

made a lot of friends with

CCA, including best friend

Ava. Both families meet up

every few months.

Olivia has Pfeiffer

syndrome and has had six

surgeries so far, with at

least two major ones left.

All of this doesn’t seem to

faze her, though. And it

doesn’t matter even when

people look at her. In her

words, she “just smiles

back.” What a great way to

handle potentially tough

situations. What great

wisdom from someone so

young.

meet oliviasanborn

2

ccakid

Families of craniofacial patients often call CCA to seekemotional support, discuss problems and identifyresources. Through our database, we are able to networkfamilies with support groups and/or others who havesimilar conditions and experiences. We also keep a listof helpful resources and are always willing to listen andoffer emotional support to family members who need ashoulder upon which to lean. For further assistance orinformation call Annie Reeves at 800-535-3643 or emailAReeves@ccakids.com

programs we offer• Toll-free hotline• List of qualifiedphysicians

• Information and support• Educational booklets• Financial assistance• CCA Network, a quarterlynewsletter

• www.ccakids.orgwebsite

• Annual Cher’s FamilyRetreats

• Public awareness• Family networking• Advocacy

ccaprogramsa n d s e r v i c e s i n t h e s p o t l i g h t

Watch for New Programs in 2008• Webinar • Kids Klub• Spanish booklets • Website additions

Ava Beeler (left)and Olivia (right)

wave to theirparents whileenjoying time

together.

or visual communicationdesign, because I am a veryartistic person and reallygood on computers.Another plus for going to

college is finally being ableto live on my own awayfrom home. With both mybrother and sister away atcollege, I am the only childat my house and I love it!No fighting over who getsthe computer or thetelevision. It’s just me andmy parents.I am in the workforce

now and I love my job. Iwork at Best Buy as acustomer service specialist,or cashier, for short. (I justlike the fancier namebetter because it makesthe job seem moreimportant.)Now you might think it

would be hard to work andgo to school at the sametime. I work mostly onweekends and maybe twoor three times during theweek. I am good withbalancing out myschoolwork with work.I am on the honor roll at

school and it just feels likesuch an accomplishmentwhen I get good grades.Along with getting goodgrades in school I am alsoinvolved with many thingsas well, such as studentcouncil, Key Club, SpanishClub and even the

hello, my name isDerrick Wolf, and I

am 17 years old. I wasborn in Cincinnati, OH. Ihave an older brother,Kevin, and an older sister,Sara.For the first few years of

my life, I had to gothrough various operationsto fix complications. Ibelieve my first surgery wasputting in a trach when Iwas only a few days old.My most recent surgerywas closing the hole in myneck from my trach. So,yes, I finally got my trachout on August 7, 2006.I would tell you what

type of syndrome I have,but I don’t even knowanymore. I was classified ashaving Miller syndrome,but at my last craniofacialteam meeting, my geneticsdoctor told me I have awhole new unknownsyndrome. I am basicallymy own syndrome! It isreally cool! My doctor iseven writing an articleabout me for a medicaljournal.I am currently a junior at

Oak Hills High School,although I’ll be a senior injust a few months! I amlooking at differentcolleges to apply for, toget the whole collegeexperience. I would like togo into computer graphics,

yearbook. The list goes on,but I can’t mention themall for you because it is justway too much.Now I know that I look

different than all myfriends, but I do all thesame things they do. Idon’t let anything hold meback.I am different even from

the kids who have similartypes of syndromesbecause of my arms andhands and because I haveprosthetic lower legs. Eventhough I have prostheticlegs, I don’t let it hold meback, because to me theyare like my real legs, exceptit doesn’t hurt if somethinghits them. They are heavier,but you get used to it afterawhile.I can ride a bike, swim,

play soccer, hang out withfriends, oh, and I can evendrive! I have had mylicense for more than a

year already, and I havenever gotten any tickets orhad any accidents, knockon wood. People alwaysask if it is hard for me todrive and I just smile andsay, “Nope it’s easy!” Justbecause we look differentdoesn’t mean we can’tpush a pedal and steer leftor right.After reading this I am

sure you can tell I don’t likeit when people judge meon my looks as to what Ican or cannot do. If peoplethink or say I can’t dosomething I love to go outand do it just to provethem wrong.Now, there are times

where I lay in bed andwonder what my lifewould be like if I lookedlike everyone else, butoverall I am glad to bedifferent because I have adifferent story to tell.

meet derrick wolf

ccateen3

The day we broughtBrock home was one ofthe best days of my life. Iknocked on all theneighbors’ doors to letthem know, “My brother’shome today. He has a littlebit of a problem with hislip. Its called a cleft and itis so cute!”It was hard watching my

brother go through thesurgeries to repair his cleft. Ithought he would be finejust the way he was. I wasvery sad when they repairedhis lip. I cried and cried. Ididn’t understand why hecould not just be him. MyMom and Dad explained itto me several times, but itwas still so sad.I was very sweet to my

brother after each surgery.I used to play with him andhold him so he would feelbetter. I was always carefulnot to be too funnybecause I thought it wouldhurt if he smiled. He smiledat me anyway, and I lovedhis new smile too.I sometimes notice

people staring at mybrother, and it really makes

me sad. I try to tell themthat he has a cleft and thatis just the way he is. Ilearned a lot about how todeal with my brother beingteased when my family andI went to the NorthAmerican Cranial FacialConference. I also metBen, a good friend that ismy age with a cleft. It wasa lot of fun. I cannot waitto go back again!

A message from Mom and

Dad: Chase is so special to

our family. We did not know

that Brock was going to be

born with a cleft. His instant

acceptance and genuine

unconditional love for Brock

made it so much easier for us

to cope. I’ll never forget the

first time I took Brock to the

grocery store and people

were staring at him. I was so

heartbroken. Chase noticed

people staring too and he just

started to educate them.

Telling everyone around him

“He has a cleft. He uses a

special bottle. He has a great

smile too. Want to see?” His

sweet innocence made me

realize people were not

staring to be mean, they were

more curious than anything.

So together Chase and I

educated everyone we could.

He is our hero!

meet chasetomanski

hi, I’m Chase. Myfamily calls me Chaser.

We live in The Woodlands,TX. My favorite things todo are reading, swimming,riding my bike, fishing withmy Dad and playing withmy little brother Brock.I am seven years old and

in Second Grade. I am alsoa Cub Scout and justearned my Wolf badge. Ialso won third place in myfirst Pinewood Derby.When Brock was born, I

was almost 5 years old.Brock was born with abilateral cleft lip andpalate. I loved himimmediately and could notreally understand why

ccasupersib

everyone was so concernedabout Brock’s cleft. Ithought he was beautifuljust they way he was. I wasjust so happy to have abrother. I didn’t care whathe looked like.My brother Brock also

had some trouble breathingand had to stay in the NICUfor four weeks. I enjoyedgoing to the hospital tovisit him. Every time Iwould leave, I would cry forhim to come home with us.It was so hard to leave himthere alone. The nursesassured me that they wouldtake good care of himwhile we were gone.

4

2008 heroes for hope gala

children’s Craniofacial Association is proud toannounce they will join the Beneficiaries Circle of the

Jorge Posada Foundation’s 2008 Heroes for Hope Gala.The Gala will take place on Monday, June 16, at 583 ParkAvenue in New York City. The event will begin with acocktail reception at 6:30 p.m., followed by dinner at 7:30.Joining other organizations such as Montefiore Medical

Center and the National Foundation for FacialReconstruction, CCA will raise funds and awareness forprograms and services. The Jorge Posada Foundation coversall expenses allowing 100% of the ticket price to godirectly to support CCA’s mission.The Jorge Posada Foundation is a nonprofit organization

founded by the New York Yankees’ All Star Catcher, JorgePosada and his wife Laura. Their son, Jorge, Jr. was

diagnosed with craniosynostosis when he was just 10 daysold and had to undergo seven major surgeries to correctthe condition.Heroes for Hope Gala has been attended by many of

Jorge’s friends from the New York Yankees team, both pastand present, including Derek Jeter, Bernie Williams,Jason Giambi, Alex Rodriguez, Tino Martinez,Mariano Rivera, Robinson Cano, Bobby Abreu, WillieRandolf and Joe Torre as well as many other celebritiesand close friends.Tickets are on sale at $750 per ticket or a table of 10 for

$7,500. For more information on tickets and corporatesponsorships, please call CCA Development Director, JillGorecki at 1.800.535.3643, or email her atjgorecki@ccakids.com.

ccamugshot

tommy Dale of Horseheads, NY, celebrates his 6thbirthday on April 1st with a cupcake and milk in his

CCA Mug. Happy Birthday Tommy!

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 at800-535-3643. All we ask is that you apply at leastfour to six weeks prior to your next appointment.

5

donor in the spotlight

major donors, Sheryl and John Paul, are this issue’sDonors in the Spotlight.The Pauls’ company, Association Works, is a consulting

firm to nonprofit organizations, including CCA. Asfacilitators of our yearly board retreat, they’ve guided ourboard and staff to formulate and update our strategicplan, which is our framework for effectively implementingour programs and services. John and Sheryl truly believe inour mission, and we are grateful for their support, both in-kind and financial. We are proud to call them friends.

craniosynostosis consistsof premature fusion of

one or more cranialsutures, resulting in achanged head shape. Asgeneticists, we tend to cat-egorize craniosynostosisinto several subgroups: pri-mary versus secondarycraniosynostosis and syn-dromic versus non-syn-dromic craniosynostosis.Primary craniosynostosis

means that there is adefect in the formationprocess of the connectivetissue of the skull.Secondary means thatthere is a problem with thebrain and its growth, inturn leading to early sutureclosure.Syndromic means that

the reason the skull closedis that there has been achange in genetic material.Non-syndromic means thatthe factors are probably acombination of environmentand genetics but without aclearly defined heritablecause.

The Genetics ofCraniosynostosisHere is a summary of a

few major categories andsome genetic testing that isavailable.

Chromosomal Disorders

The first major categoryof genetic disorders, whichmay cause craniosynostosis

or other major birthdefects, is chromosomaldisorders. Chromosomesare organized structures ofDNA that carry ourestimated 20,000 genes,which provide a map of ourhereditary characteristics.We have 46 chromo-

somes in every cell of ourbody, except the eggs andthe sperm. Eggs and spermeach contain 23 chromo-somes, in effect waiting tojoin back into 46 again.Cells in our body makeeggs and sperm by dividingfrom 46 chromosomes to23. Sometimes mistakeshappen. An extra chromo-some may get put into asingle egg or sperm beforethey join together, beforeconception.The classic example is

Down syndrome, whichmost commonly resultswhen an extra chromo-some 21 gets put into anegg or sperm; after con-ception, there is an extrachromosome 21 in virtuallyevery cell of the baby’sbody. Since each chromo-some has hundreds ofgenes, this can causedevelopmental changes inthe formation of manyorgans, including the brain,heart, and face.There are several known

chromosomal disorders,which are less easily recog-

nizable than Down syn-drome. In some of thosechromosomal disorders,not an entire chromosomebut rather a part of a chro-mosome is missing or dou-bled. For example, thereare some patients withcraniosynostosis who havebeen reported to haveparts of chromosome 7missing. This is suspectedin children who may havecraniosynostosis along withother problems such asfailure to thrive, facial fea-tures that are differentfrom their parents, or asso-ciated heart problems.When a chromosomal

disorder is suspected, akaryotype (a map of thechromosomes) is madefrom a patient’s white bloodcells. The chromosomes areviewed under a microscopeand arranged with the helpof a computer.Under the microscope, it

is possible to see thatchromosomes have a parm (standing for petite)and a q arm (the longerarm) joined together bywhat is called acentromere. Even in thebest of circumstances, thelimitation of a karyotype isthe inability to see smallparts missing or doubled.

Single-Gene Disorders

Craniosynostosis mayalso be caused by single

gene disorders, in which aknown change in one ofthe 20,000 genes causes abirth defect. An example ofa single gene disorder isCrouzon syndrome. It hasbeen discovered that agene called the “fibroblastgrowth factor receptorgene,” involved in control-ling the timing of thebones coming togetherand hardening, is responsi-ble for Crouzon syndrome.Special sequencing of thefibroblast growth factorreceptor gene may reveal achange in the DNA code inpatients with Crouzon syn-drome.Other craniosynostosis

syndromes that are causedby changes in a single geneinclude Pfeiffer syndrome,Apert syndrome andMuenke syndrome.Children with any of thesesyndromes have featuresthat are often recognizableby a geneticist.

Multifactorial Disorders

Sometimes, when asingle suture closes early ina child, but there are noadditional findings, amultifactorial inheritancepattern is suspected. Insome cases, genetic testing

types of craniosynostosisBy Natasha Shur, MD, and Dianne Abuelo, MD

6 continued next page �

Figure 1: An example ofTrisomy 21, with an extrachromosome 21 revealed

on the karyotype.

7

of the fibroblast growthhormone gene is stillindicated. In most cases ofmultifactorial disorders,there is no genetic testingavailable.

Microdeletion Disorders

Sometimes patients withcraniosynostosis may havea small piece of achromosome missing,which contains multiplegenes, but the piecemissing is too small tocatch in an ordinarykaryotype.A new test has become

available, called amicroarray test, also knownas “comparative genomichybridization” and “arrayCGH.” DNA from a patientis isolated, mixed withcontrol DNA, and it isplaced over a chip. Areasthat are missing lookgreen, and areas that areduplicated look red.Sometimes, syndromes

with known clinicalcharacteristics arediagnosed. Other times,syndromes are diagnosedwith less knowncharacteristics but clearly

causative of particularproblems. Still other times,variants of unknownsignificance may be found.It turns out that asignificant proportion ofthe “normal” populationhas some variation withduplicated or deleted areasof genes. This may explainvariability betweenindividuals.It would be fascinating to

perform microarray testingon Van Gogh and Einstein.Perhaps, deletions orduplications of genes canendow talents or otherpositive characteristics, likecreativity.Microarray testing is not

a perfect test. It cannotdetect when two piecesfrom the parent havechanged places. It is moreexpensive and complexthan a karyotype, oftenrequiring insuranceapproval. Explainingvariants and interpretingresults remains challenging.Finally, there are othercategories of geneticdisorders that cannot bediagnosed with microarray.

Case ExampleGiovoni came to the

genetic clinic when he was11 months old. He hadfailure to thrive (he was thesize of a four-month-old),global developmental delayand facial features that didnot resemble his parents. Agenetic cause such as achromosomal disorder wassuspected.Several tests were done,

including a karyotype,which returned as normal.Then a microarray test wasordered. It revealed a smalldeletion, which included anestimated 10 or moregenes, on the q arm ofchromosome 1.We do believe that

making the diagnosis hashelped Giovoni and hisfamily. First, it preventedfurther tests to excludeother more worrisomecauses for his medicalproblems. Secondly, hismother encountered somedifficulties receivingadequate therapy. Thediagnosis helped explainwhy he needed extraphysical, occupational andspeech services, and hereceived additional hours.Currently, Giovonicontinues to makeprogress. He is a delightfulboy with a lot of potential.His mother has enrolled ina rare chromosomaldisorder support group.Summary of and

additional features thatmay merit referral togenetics for testing

• Craniosynostosis alone orin combination withother anomalies

• Multiple birth defects• Significant developmentaldelay or undiagnosedmental retardation

• Dysmorphic facialfeatures (do not resemblethe parents)

• Autism• Micro or macrocephaly(head circumference verysmall or very large)

• Cleft lip and/or palate• Deafness that issensorineural (due to anerve problem)

• Unusually tall or shortstature

A special thanks to SusanMello for allowing us toshare Giovoni’s story andinspiring us as a wonderfulmother, artist and advocatefor her son.

Figure 2: The Microarray Test

Case example to illustrate thehow genetic testing may beused.

it was a beautiful springmorning when our son

Henry was born. The townwas still sleeping as wedrove to the hospital. Littledid they know this babydiagnosed with Apertsyndrome would be lovedby so many in ourcommunity through anevent we’d host nearly five

years later. Little did weknow that the arrival ofthis same baby would stirso much passion in us thatwe would becomeadvocates for children justlike him. But we havefound that not “knowing”and doing it anyway hasbeen a common theme inour lives. And putting onHenry’s March without theexperience of organizingmore than a birthday partyor garage sale didn’t stopus either.

Henry’s March wasinspired by Stacy Swihartof Canton, OH, who held a5K walk she and herbrother Rick called Seth’sStride. “We should dothis. We’re going to dothis” is how I rememberRachel’s comments to me.

“It can’t be done. Youdon’t have enough time.”Rachel and I heard thismore than we care toremember. “They obviouslydon’t know Rachel,” Ithought, “and theyobviously don’t know me.”Last December, 90 daysstood between us andMarch 15 — not muchtime to plan an event ofany magnitude, let alone acharity event, run by 70volunteers and fueled bypersonal donations andcorporate sponsorships.“It’s going to rain. No

one will show up.” Therain never came, butpeople did come — morethan 500 of them (morethan 300 registeredrunners/walkers). Theycame from miles around,some traveled more thantwo hours to be with us,all to be part of somethingspecial. Some ran, somewalked and all smiledthrough the 5K course onthe Stanislaus campus ofCalifornia State University.The only thing brighterthan the sunshine was theyellow Henry’s March

T-shirts and the smiles ofeveryone who wore them.It was something we allhad in common, every lastone of us.“People won’t donate.

We’re in a recession.” InCalifornia’s central valley,unemployment runs highand foreclosures are on therise. “Who will donate to a

cause they’re unfamiliarwith and an organizationmany had never heardof?” People did donate. Infact, we raised morethan $26,000! While mostwas donated $20 and $30at a time by individuals,several businesses believedin our mission of raisingawareness for children with

8

henry’s march

see henry’s march, page 15

9

• 3rd Annual CraniofacialAcceptance Month.CCA mobilized familiesacross the country tospread the word andraise funds. Radiointerviews and PSAs wereaired.

• Financial Assistance.CCA provided funds forfood, travel and/orlodging for 68 tripsfamilies had to make formedical care.

• Syndrome Booklets.We published three newsyndrome booklets: AGuide to UnderstandingMicrotia, A Guide toUnderstanding Moebius

Syndrome, and A Guideto Understanding PfeifferSyndrome. Booklets onPierre Robin Sequenceand vascular malforma-tions were written andwill be published thisyear.

• CCAKids.org. We madeupdates and improve-ments to the CCAwebsite.

• Quarterly Newsletters.We distributed 13,500newsletters each quarterin 2007 and placed manymore in hospitals andhealthcare offices.

• Family Networking. Wecontinued to broadenour network of familiesacross the United States.

• CraniofacialReconstructive SurgeryAct (HR2820). CCAadvocated for fairinsurance coverage bygarnering support forHR2820.

• National AwarenessEffort. Nine regionalvolunteers led 119 localvolunteers in spreadingawareness across thecountry by distributinginformation to healthcareproviders and facilities.

Another important part ofthe annual meeting is re-visiting our mission, visionand core values. Individualswho have facial differencesand their families remain

chairman, from page 1 our main focus, however,we felt our missionstatement did not accuratelyreflect that, so we changedour mission statement toput people first:

Empowering andgiving hope to

individuals and familiesaffected by facial

differences

2008 is already off to agreat start. We are lookingforward to implementingeven more new programsand services this year (see“Watch for NewPrograms,” page 2).

Charlene SmithExecutive Director

good newscCA Mom, Kendall

Bilbow, has beenasked to serve on theboard of directors for theLoeys-Dietz SyndromeFoundation (LDSF).Kendall and John Bilbowhave been active advocatessince the birth of theirdaughter, Jylian, whowas diagnosed withcraniosynostosis and aclosely-related rareconnective tissue disorderthat was finally identifiedas LDS.The Loeys-Dietz

Syndrome Foundation(LDSF) is a 501(c)(3) non-profit organizationorganization dedicated to:

• encouraging educationabout Loeys-Dietzsyndrome and relatedconnective tissuedisorders to medicalprofessionals and laycommunities in order toaid in identification,diagnosis and treatmentof Loeys-Dietz syndrome

• fostering research aboutLoeys-Dietz syndrome

• providing a supportnetwork, for parents andfamilies affected byLoeys-Dietz syndrome(www.loeysdietz.org)CCA is the umbrella

organization for allindividual-syndrome causesand we welcome LDSF and

all the families Kendallnetworks with.Congratulations & best

wishes Kendall!

See “More Good News” onpage 12.

save the date

September 22, 2008

Whitestone Golf Club

Benbrook, TX

cCA will hold the first

annual Jylian’s Links

of Love benefit golf

tournament On Monday,

September 22, at

Whitestone Golf Club in

Benbrook, TX. The

tournament will begin with

a shotgun start at 1:00,

and will end with a dinner

and silent auction. Visit

www.jylianslinksoflove.com

for registration and

sponsorship details.

Come join us!

Kendall and Jylian Bilbow

So far, the movie wasplaying out just the way Ihad pictured it in my mind.The head appeared and Ithought, “Wow, this isamazing.”That’s when our doctor

simply and calmly said,“There is a problem. Yourbaby has a cleft lip andpalate.” She said it sopeacefully, so naturally andso honestly that, asshocking as it was, Joe andI look back on thatmoment with gratefulnessin our hearts that herbedside manner was soexceptional.

We couldn’t have askedfor a better doctordelivering our baby, but itwas at that very momentthat my mind wentspinning out of control —as if I was no longer partof the birthing process.I couldn’t quite process

the information, but I didwant to know if it was aboy or girl. A momentlater, Joe said, “It’s a girl.”Again, I was in a state ofshock as my mind filled upwith a million questions.

“What does this mean? Isshe healthy? Will she beokay in life? What did I dowrong? Will I be able tocare for her?” Thequestions went on and on.We were so thrilled to

have a daughter and weproudly named herRachael Kathleen. In aninstant, I had the deepestfeelings of love,amazement and theoverwhelming need toprotect her, care for herand hold her forever. Imarveled at this amazingcreation of human life.During the next 24

hours, we were floodedwith information on howto feed her, when thesurgeries would begin,how to connect with otherfamilies, what to expectover the next 15 years.It was all so overwhelm-

ing. I just wanted to learnhow to care for my new-born and go through all ofthe other emotions a newmom goes through. I didn’twant to hear about surger-ies, feeding issues, speechissues, ear infections, dentaland orthodontia issues,breathing and snoringissues, etc. I just wanted tofeed her, bathe her, love herand watch her grow.I wanted all of us to feel

“normal,” but I knew that“normal” would take on adifferent meaning. Joe andI were determined to learnas much as we could, butto also enjoy being newparents. We were so proudof our baby girl. We did

not want the cleft lip andpalate to define Rachael.We wanted Rachael tolearn how to define herselfwith our love, support andguidance. We knew in ourhearts it would be a longmedical journey.The first of many

surgeries occurred whenRachael was three monthsold. As we prepared forthat event, it seemed likethree years. I knew Icouldn’t feed her 12 hoursbefore the nurses took herout of my arms and I keptthinking, “How do I lookinto those beautiful blueeyes and not feed her.”The night before was an

emotional roller coaster. Ihated everything. I wasmad at myself. I felt like Ihad failed her. She washappily just being a baby,and I couldn’t explain thepain that she was about toendure.During that first surgery,

we watched every secondon the clock. It was longand frightening. Thesecond most shockingevent, after being told thatRachael had a birth defect,was how Joe and I feltafter her first surgery.We had gotten so used

to her facial features thosefirst three months that wedidn’t want them tochange. We hadn’tanticipated the emotionalaspect of all of this. Wewere so focused on themedical procedure. Weloved her just the way she

was, and we didn’t wanther to change.After each surgery, we

were left dealing with thepain, discomfort, armrestraints, feeding issues,follow-up doctorappointments, infections,and hoping and prayingthat she would remainhealthy. Immediatelyfollowing each recovery,we would then begindiscussing the nextprocedure. At times, it feltlike it was too much.After several failed

surgeries, we just keptpraying that we would findthe right help for Rachael.We tried very hard to feellike normal parents, goabout our normal businessand have fun in theprocess.People would stare and

ask questions, and wenever minded answeringthem. We felt that wewere given an opportunityto educate people aboutfacial differences, and thatit doesn’t matter what’s onthe outside.Society taught my

generation not to stare,not to ask questions, andto look away if someonehad a physical disability.Society places a great dealof importance about what’son the outside versuswhat’s on the inside. Forthis reason, I have alwaysencouraged my children toask questions, remaincurious and to be kind.We know it hasn’t been

an easy journey for Rachael.

rachel, from page 1

continued next page �10

She has undergone 13surgeries with threedifferent medical teams.And she still faces all thenormal and “not sonormal” issues that ateenage girl faces. Throughit all, Rachael remainsstrong, confident, andfocused. Joe and I see anincredibly beautiful youngwoman who has and willcontinue to accomplishamazing things in her life.Through Rachael, we

have learned to be morecompassionate and kind.We also learned how tokeep life in perspective.When I look back over thelast 14 years, I feelincredibly blessed that wewere lucky enough tobring her into this world.Rachael is about to

graduate from middleschool with honors. Sheplays the violin, loves ridinghorses, roller skating andtalking to friends.Our second daughter,

Cali, who is 12, has alsobeen an inspiration and asource of strength to allof us. At the first CCAretreat we attended, Cali,who seemed a bit down,

said to me, “I feel sodifferent here.” Talk aboutperspective.Our journey is certainly

not over. We travel toDallas every six to eightweeks for orthodontistappointments and toprepare for the next roundof surgeries. The financialand emotional expense canbe overwhelming, but Joeand I want to look backand feel like we did thebest we could for our child.We are so fortunate to livein a country where themedical care is outstanding.The medical professionals

and organizations such asCCA allow families toaccess the very bestmedical care. We have metmany wonderful people onthis journey and know thebest is yet to come. Wewish we could take awaythe pain that Rachael hasendured, but we wouldnot take away any of thelife’s lessons that havebeen and continue to begraciously taught.One of the best pieces of

advice someone gave mein those first days at thehospital was to take asmany pictures of Rachaelas we could before her firstsurgery. This would showher how proud we havealways been of her and thechance for all of us to havethose precious visualmemories of our beautifulbaby girl born on April 13,1994 — the Hollywoodmovie the way it wasmeant to be written.

calendar of eventsdate event contactJune 16 Heroes for Hope Gala JGorecki@ccakids.com

Jorge Posada Foundation 800.535.3643.

583 Park Avenue

New York City, NY

June 26-29 18th Annual Cher’s Family AReeves@CCAkids.com

Retreat 214.570.9099

Myrtle Beach, SC 800.535.3643

July 11-13 Moebius Syndrome Foundation www.moebiusnj.org

International Conference VIII

Parsippany, NJ

July 21-23 NACFC www.ameriface.org

Tuscany Suites and Casino

Las Vegas, NV

August 4 6th Annual Pete’s Scramble www.petescramble.com

for CCA

Prestwick Village Golf Club

Highland, MI

August 11-12 Cher Convention www.cherconvention.com

Caesar’s Palace

Las Vegas, NV

August 23 Third Annual Wendelyn's wendelynnyvonne@hotmail.com

Course of Dreams Golf Challenge

Country Club of Arkansas

Maumelle, AR

September 13 2nd Annual Seth’s Stride mythreekids@neo.rr.com

for CCA Stacy Swihart

Canton, OH www.firstgiving.com/sethsstride

September 20 Alexa’s Appeal for Craniofacial www.firstgiving.com/

Awareness, Dinner/Auction ccaawarenessdinner

Center Plaza

Modesto, CA

September 22 Jylian’s Links of Love for JGorecki@ccakids.com

CCA, Celebrity Golf Event JyliansLinksofLove.com

White Stone Golf Course 800.535.3643

Benbrook , TX

October 4 4th Annual Friends of Jeremy gdale@stny.rr.com

Golf Tournament www.friendsofjeremy.com

Country Club of Corning

Corning, NY

October 11-18 Disney Cruise 2008 www.apert.org

11

brandon Moore, ofBossier City, LA, recently

received an Honor RollAward. Brandon has excelledin school over the last fouryears and has been a straight“A” student since he enteredFirst Grade. He is an amazingboy and continues to makegreat successes as he movesalong. Brandon, we areproud of you!

miranda Larkin, ofOcala, FL, recently had

her wish come true. She hadthe opportunity to meet theJonas Brothers at their concertin Orlando! She went on stageto watch them perform anddo their sound check beforethe concert. She also went ontheir tour bus. They even gaveher an autographed guitar!She was treated like a VIP! Herwish came true through NewHope for Kids, who grantwishes to children under 19with a life-threatening or life-challenging illness.

more good news

12

• Cash for Trash!Save your discarded cellphones and empty laser /ink cartridges and CCAcan turn them in forrebate funds. Call usat 214-570-9099 or800-535-3643 formore information.

• Matching GiftsMany companies offer amatching gift programthat could double or eventriple your gift to CCA!Contact your humanresources office to findout if your company hassuch a program.

• Planned GivingTax preparation time isalso a good time toconsider long-term taxsavings. When youconsult an attorney orinvestment professionalregarding your wishes fordistribution of your assetsin your will, consider aprovision for CCA. Yourplanned gift in the formof an endowment will liveon after you.

• CCA Web StoreYou can now shop atCCAKids.org for yourT-shirts, mugs, caps andmore. So shop now andshop often!

• Clubs / HobbiesHave your club organize abenefit for CCA. Use yourhobby or something youlove to do to raise funds.

• Denim DaysRaise funds at work forCCA. Establish a special

how to raise fundsfor ccacCCA depends on funds

donated by individuals,proceeds from family andfriends’ fundraising efforts,corporate giving andfoundation grants. Theneed is great as we growto provide programs andservices to many moreaffected individuals andtheir families. Any help ourreaders contribute is mostappreciated. Here are someways to help.

• www.goodsearch.com(Powered by Yahoo)Enter Children’sCraniofacial Associationas your beneficiarycharity. (You only have todo this the first time. Youmay add others if youwish.) CCA will receiveup to a penny each timesomeone uses theGoodSearch searchengine.

In addition to“searching” for CCA, youcan “goodshop” onlineby clicking thru toGoodShop.com, a newonline shopping mallwhich features hundredsof great stores includingBest Buy, Macy’s, Apple,and Orbitz. It’s easy, justgo to GoodShop, click onthe store’s logo and thenshop as your normallywould! You get thesame prices, but apercentage comes to us!

day or days foremployees to make adesignated donation(cash or check) to CCA inreturn for wearing bluejeans. The donation isusually $1 to $5,depending on how oftenthe event takes place (forexample $1 for a weeklydonation, $5 for amonthly donation). Anyhigher amount would beat the discretion of thedonor.

• Civic OrganizationsPublic awareness leads tocontributions. Contactand solicit opportunitiesto speak to your localcivic organizations suchas Rotary Clubs, KiwanisClubs, even HOGorganizations (CCA hasmany ‘biker’ supporters).Distribute brochuresand/or newsletters orother CCA-sanctionedmaterials for awarenessand information. Ask forcontributions.

• Friends / FamilyLetter Appeal Draftletter to family, friendsand acquaintances—anyone who has met orencountered your child.Contact CCA for asample letter.

• Kitchen Shut DownRaise funds by raffling offchances to win meals forevery day of the week, sothe winner can “shutdown” their kitchen.Local restaurants candonate meals or coupons.This idea could be usedfor a week ofentertainment, such asmovie rentals or theater

tickets. Call CCA formore information.

• Collection Cans Asklocal businesses to placea can or box (provided byCCA) to collect donationsor take a can around tocollect donations.

• Get On Board! Read ournewsletter and learnabout and participate inthe events, raffles andfunding efforts of CCAand our supporters. Passthe donor envelope tosomeone you knowlooking to support acharity. And when youare finished with yourcopy of our newsletter,spread the news! Pass italong or leave it in awaiting room.(Remember to removeyour address label.)

• MonaVieRaise Funds for CCA withMonaVie, an amazingproduct packed withantioxidants. Four ouncesper day has the antioxi-dant capacity of 13 serv-ings of fruit and veggies!!Contact CCA mom,

Rachel Johnson to findout how you can helpCCA and yourself withthis outstanding gift fromthe rainforest.www.mymonavie.com/TJandRachelphone: 209.664.0500 or209.505.1673

• Buy Gifts fromBeautiControl atwww.BeautiPage.com/ccafriends and CCA getsthe agent profit!Questions? Email RoseSeitz at rseitz@directed-tech.com. These gifts

cause no clutter, becausethey get used up!

• Book all of yourtravel needs atwww.ytbtravel.com/ccakids including flights,cruises, hotels, rentalcars, even your passport.A percentage comesback in funds for CCA.And, you may rest easily,knowing the site ispowered by reliableTravelocity.

• CCA supporter DanFreeman is a Lifelockaffiliate (the service thatprotects your identityfrom theft) and willgenerously donate$15.00 per sale to CCAwhen buyers enter thepromo code: CCA. Seewww.lifelock.com to findout how the serviceworks and to help raisefunds!

• Tupperware now has aformal fundraisingprogram and you maycontact CCA mom,Kathy Hubbard,zibadoo@juno.com tolearn more about how toraise funds for CCA.

• www.itzybitzy.comItzy Bitzy sells infant andtoddler squeaky shoes.Children love to wearthese shoes that squeakwhen they walk, and theyalso serve as a greattherapy tool in helpinglittle ones learn to walkproperly. These shoes alsohelp parents keep trackof their little ones. 10%of Sales go to CCA.

New Ideas• FirstGivingWe're pleased to providea free customized CCA'firstgiving' site foranyone who wants helpraise funds for CCA.Log onto

firstgiving.com/ccakidsand tell your personalstory or post an eventyou're having. You caneven set a goal and tracksuccess! When you tellyour own story aboutyour CCA Kid or why youare involved with CCA,folks will respondbecause they know YOU!

• Currentfun.com-Go to currentfun.com-Click on “start shoppingnow”-Buy what you want-Click “proceed tocheckout”-Choose Texas for theState-Then click on Children'sCraniofacial Association-Then finish the order asyou would any orderFolks can also order

catalogs through that siteif they want to go doorto door instead of theinternet. CCA receives50% of what folks orderthis way. The catalogchanges seasonally, so it'snot a one-shot fundraiser...people can go in at anytime (as long as they gointo currentfun.com (notthe regular Current sight).-Place and order andCCA will benefit from it.

Looking for ideas?Contact Jill Gorecki atJ.Gorecki@ccakids.com

New!

New!

mark and Laurel Sanborn of Richmond, VT, haveembarked on a new idea for raising funds for CCA

through Current. Currentfun.com is a sister site toCurrent (the well-known cards, paper goods and gift itemscatalog and website) made especially for fundraisingefforts. When you shop from this site and indicateChildren’s Craniofacial Association as your charity, 50percent of all purchases will come back in funds to benefitCCA! Laurel tells us since the catalog choices changeregularly, this is an ongoing effort. Thank you!

fundraising news

the second Make Your Mark Starbucks team effortwith CCA took place on Saturday, February 9th. Once

again, Emily Tipton, Manager of the Starbucks acrossfrom Medical City Hospital held a community clean-upday. Volunteers picked up litter on the bike trail thatborders the area. Afterward, everyone stayed to createvalentines for our CCA Kids in the hospital. Starbucks will

potentially donate $10 for each volunteer hour, up to$1,000. You guessed it — we had 50 volunteers includingStarbucks employees, our friends from the Italian Clubof Dallas, and Brownie Troop #8939 among others,who put in at least two hours each! Thanks again to Emily,her co-workers, our volunteers and, of course, Starbucks!

our devoted volunteers from The Italian Club ofDallas invited our staff to the club for dinner —

and a big surprise. They took up a collection for CCAand presented us with $250! Grazi!

14

a facial difference andraising funds for thosefamilies through CCA.What began as a

planned walk in theneighborhood, Henry’sMarch (as named by our10-year old daughter,Lauryn) ballooned into afull-scale community event,complete with racingmascots, a 100-meter dashfor kids, a 5K fun run,booths of local vendors, aface painter, raffle prizesand uplifting music to setthe mood.We are very thankful to

our volunteers andsponsors. Their willingnessto give their time andmoney when otherscreated reasons why itwouldn’t be successful isso appreciated. We hopeour determination to makeHenry’s March a successwill inspire others to facethe “unknown” in theirown lives and act upontheir passion and their lovefor their child.For more pictures and

details about the race visitwww.myspace.com/henrysmarch

TJ JohnsonHenry’s dad

henry’s march,from page 8donors, january 1 – march 31, 2008*

Gifts fromIndividuals

CCA Supporters($25 to $100)

AnonymousMildred BonneauAnn ByrdSergio DominguezMary Kay & Thomas GardinSidney GoldmanJennifer & Michael HastingsJohn “Jim” & Arleen HeirtyJohn Hermanek & Mary DrillA.E. KarpenDomenica & Robert McKinnonJames J. & MaryJo MontalbanoJessie & Theodore MorganHarlena MortonMina MulveySandra PeckinpahAnnie ReevesChris RienerIris SchellWilliam SchwerdMary Ann SilvestroStephen SmithErin & Crispin StephensLaura TalmusJohn Zaengle

CCA Friends($100 +)

Mari-Jo & Paul BatchelorNancy BursonThomas CallahanDiana CritchlawKristine & George DaleRobert FeinsteinJill GoreckiMargaret GruppRoger & Carolyn LambRobert NordnessRandolph SchaeferJessica & Frederick SchwerdKenneth Wilson

CCA Extended Family($500 +)

CCA Sponsor($1,000 +)

CCA Benefactor($5,000 +)

Mark Hagen

Memorials /In-Honor Gifts

Kevin Alicbusan, in honor ofAaron Nocum’s 1st Birthday,by Caroline Mingoa

Renee &Wayne Baxmann, inhonor of Robbie Gorecki

Doug & Ann Burgin, in honor ofRick Dornier

Alexandra Chambers, in memoryof John Michael Chambers

Thomas & Shelley Flores, inhonor of Braxton Flores

Jim & Arleen Heirty, in memoryof Margaret Lux

Jim & Arleen Heirty, in memoryof Lois Witkowski

Law Offices of Steve Howen, inhonor of Brian Scott Cook

Sarah Erb & Andrew Keller, inhonor of Olivia Sanborn

Donald & Ann Lucas, in honor ofBrody Lucas on our 43rdAnniversary

Jim & Maryjo Montalbano, inhonor of their daughter,Jennifer’s 33rd birthday

Jessie & Theodore Morgan, inhonor of Morgan Baldwinfrom Nana

Ralph Nuckols, in honor ofJeremy Dale

Andrea Richard, D.O., in memo-ry of Ram Nath Pathlak

Jere Robertson, in honor of JaneMonell

Jessica & Frederick Schwerd, inhonor of Megan Cronin

William Schwerd, in honor ofMegan Cronin

J.B. & Cynthia Wills, in honor ofReed Wills

Corporate /FoundationGifts

CCA Corporate /Foundation Friends(up to $1,000)

America’s Charities (EmployeeGiving Funds Management)

American Express Foundation(Employee Gift MatchingProgram)

Bank of America (United WayCampaign Employee Giving)

Century Lodge No 492, Order ofOdd Fellows

Cher ConventionCFC Chicago AreaCFC Coachella Valley Twentynine

Palms AreaCFC Eastern MassachusettsCFC, Fresno CountyCFC Global Impact, OverseasCFC LA AreaCFC New OrleansCFC Niagara FrontierCFC Southwestern IdahoCFC Yellowstone CountyDream Kitchens, Inc. by Keven &

Terri SchmidtFunding FactoryGonser & Gonser by Cleo GonserJustgive (donors listed separately)Network for Good (donors listed

separately)Pfizer (United Way Campaign

Employee Giving)The Prudential Foundation

(Employee/Matching Gifts)The Prudential Foundation

(Matched Gift of DianaCritchlaw)

Safeway, Inc. (purchases percent-age incentives)

United Way of BrevardUnited Way of Cedar ValleyWellpoint Foundation Funds

Management

CCA Corporate /Foundation Sponsors($1,000-$5,000)

The Redwoods Group (MatchedGift of Bill Mecklenburg)

Matching Grant funds fromSam’s Club

Vivo Brothers, Inc.

CCA Corporate /Foundation Partners($5,000 or more)

Association Works by John &Sheryl Paul

FundraisingEvents

Up to $1,000

Italian Club of Dallas Collectionfor CCA

Cash Collection Cans placed forCCA / Kim Rogers, CCAVolunteer

Cher Convention“Current” Catalog Fundraiser /

Mark & Laurel Sanborn, CCAVolunteers

Sarah Orne Jewett Collection forCCA/ Mary Zimmer, CCAVolunteer

$1,000-$5,000

Starbucks February CommunityClean-Up / Emily Tipton,Organizer w/Jana Peace, CCAVolunteer

$5,000 or more

$10,000 or more

$25,000 or more

Henry’s March / Johnson Family,Rachel, TJ, Lauren, Henry

*Listed are Monetary Donations of $25 or more through 1st quarter, 2008. We are extremelygrateful for these and all other donations, fees, purchases, fundraisers and in-kind donations notrecorded here.

We do our best to accurately recognize donors. If you notice an error, please let us know.CFC (Combined Federal Campaign, federal-employee giving)

15

Honorary Chairperson:Cher

Board of Directors:Rose Seitz, CHAIR, Youngstown, OHKurt Allen, JD, CPA, CFP, WMA,

Canfield, OHGeorge Dale, Corning, NYTony Davis, DMD, Tuscaloosa, ALDonna Gossett, Cullman, ALPaula Guzzo, Evansville, INErica Mossholder, Tuscaloosa, ALRobin 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 Gorecki

VOICE 214-570-9099FAX 214-570-8811TOLL-FREE 800-535-3643URL CCAkids.com or CCAkids.org

NONPROFIT ORGU.S. POSTAGE

PAIDRICHARDSON, TXPERMIT NO. 128

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

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

If you no longer wish to receive thisnewsletter, please email your wishes 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 would like to thank Dr. Rick

Redett, a pediatric plastic

surgeon at Johns Hopkins Hospital,

for his hard work and dedication to

CCA. Dr. Redett has written our

Pfeiffer syndrome, Moebius syndrome

and Pierre Robin Sequence booklets

(new booklet) and will be writing a

cleft lip and palate booklet for us

later this year. He has also contributed

an article for our newsletter and

serves on our Medical Advisory

Committee. He is always willing to

help, and we truly appreciate his

kindness.

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