making adifference

t he United States Armycurrently has a recruit-

ing campaign based on theslogan, “An Army of One.”Within CCA, we certainlyhave many examples ofhow one person can makea difference. I think we allknow of individual patients,family members, doctors,nurses or other caregiverswho have changed lives forthe better.

One such person isDonna Gossett ofCullman, Alabama. Whenshe was nine years old,Donna was diagnosed withfibrous dysplasia, a chronicskeletal disorder. In hercase, the condition led toabnormal growth of herleft cheek.

Donna grew up with thecondition although thestares and comments ofboth children and adultson the street were often

ccanetwork

empowering and giving hope to facially disfigured individuals and their families

newsletter of the children’s craniofacial association Cher—honorary chairperson fall 2003

insidecca kid freddie seitz . . . 2cca student scott guzzo . 3coping with teasing. . . . 4corporate opportunites . 6financial assistance . . . . 6klubhousekids . . . . . . . . 6biker news. . . . . 7-10sturgis 2004 . . . . . . . 10program spotlights . . 11families raising funds 11the RED device . . . . . 12charge for cca . . . . . . 143 cheers . . . . . . . . . . 16

see chair, page 15

a mother’s story

iwas 29 years old when I became pregnant with my firstchild. My doctor estimated my due date to be October

3, 2002, my deceased mother’s birthday, but I was actuallyinduced October 4, my stepdaughter’s birthday. Everyonehad told me that I was sure to have a healthy baby. Myfamily and I were very excited.

My daughter, Macey Gaitlyn, was born on October 5 at8:10 am, weighing 6 lbs, 7.4 oz. The doctors seemed tothink she was a healthy baby, saying that her head wasswollen because of the journey through the birth canal. Iwasn’t so sure. Not being familiar with any other “syn-dromes,” I immediately thought she had Down’s Syndrome.

My obstetrician called a neonatal specialist to observethe shape of her head. He said that it was normal and theswelling would go down in a few days. Later a nurse

see macey, page 13

The 2004 Annual Cher’s

Family Retreat will be

held in Tempe, AZ on

June 24-27. For more

information contact Jana

Butera at 800-535-3643 or

JButera @ccakids.com.

2

my name is FreddieSeitz. I am eleven

years old. I was born inYoungstown, OH, onMonday, July 20, 1992. Ihave two brothers,Jonathan and Robbie.Robbie is two years old andJonathan is eight. I live inPoland, Ohio with my par-ents, and my brothers.

I have a Honda XR70 dirtbike and so does my broth-er. We like to ride whenwe come home fromschool. I like to ride mystunt bike too with mybrother and go off of

jumps. I also race in the AllAmerican Soapbox Derby.It’s a lot of fun — the bestpart is going fast. I’m aCub Scout and a secondyear Webelo with Pack 44.We do a lot of fun thingsat Scouts. I also like to playFlag Football. My team’sname is Funny Farm, whichis the name of a comedyclub in Youngstown.

I started a new schoolthis year, where I’m a fifthgrader. It was a little scaryat first, but I like it, and allof the kids are really nice. Imade a lot of new friends

meet freddie seitz

— many of them are in thesixth grade. They’re learn-ing sign language so wecan communicate easier. Iam deaf and I am trying toteach the kids some signs.My friends also talk to meby writing on a note padthat I carry with me.

I was born withGoldenhar syndrome andhave had a lot of surgeries.We go to Dr. Kawamotoin Los Angeles for my sur-geries in the summer. It’snot fun having the surger-ies, but when we go toL.A. we get to visit a lot of

ccakidFreddie (right) and his brother, Jonathan (left) with their dirt bikes.

cool places. We’ve been toDisneyland and Legoland,where there are a lot ofcool buildings made out of Legos.

I also belong to CCA. Wego to parties with thegroup and have a lot offun. Sometimes Chercomes too and brings a lotof cool things. I have a real-ly good time seeing her ather concerts. She’s very niceto us, and if she reads this Iwant to tell her, “Thanks!”

ccastudent

meet scott guzzo

i’m Scott Guzzo. I’m20 years old and a

senior at Central HighSchool in Evansville, IN.My school aide, Mrs.Maxey, has been with mesince third grade.

I’ve been singing in theschool choir since seventhgrade. Last year, I was inmy school’s production ofGodspell. We had an all-guys, all-night cast party.That was so much fun,especially hanging outwith the other kids.

My brother, Aaron, is15, and he is my bestfriend. He sings and actsin school plays.

As for my hobbies, Ilove to watch NASCARraces, and Jeff Gordon ismy favorite driver. I alsolisten to music in mybasement, which is deco-rated with lots of discolights. I play songs on thestereo while I run thelights. Golden oldies aremy favorite songs and, ofcourse, Cher is myfavorite singer andactress. I like to travel andstay in hotels. SometimesI book my hotel staysthrough the Internet, tomake sure they’re accessi-ble for my wheelchair.

Hospitals have alwaysbeen a part of my life,and I consider the doctors

and nurses my friends.When I go to RileyChildren’s Hospital for myannual visits, we all havea good time together.

I’ve always gone tochurch and love God. Andmy parents have taughtme that one person canmake a difference inthings. I think that I domake a difference.

I wish people wouldunderstand that I’m okay,just like I am. I know thatI’m different, but that’sokay. Every person is dif-ferent. Sometimes I thinkabout what it would belike to walk, to eat foodthrough my mouth and totalk so everyone couldunderstand me — butthat doesn’t necessarilymean I want to changethose things. We all aresupposed to do the bestwe can with who we are.I love being me.

in a Congressional Forumon the ReconstructiveSurgery Act. That was anawesome experience.

Our family andWendelyn Osborne drovefrom our hotel to theguard gate beside theCapitol building, lookingfor a parking place thatwas wheelchair-accessible.The guards first did a secu-rity check on our van. They

3

on June 25, 2003, Iwent to Washington,

DC, to the United StatesCapitol with several otherpeople from CCA to testify

mr. guzzo goes towashington

see 2003 washington dc, page 14

Left: Scott Guzzo in his seniorpicture.

Below: Scott and his momconference together at theCongressional Forum on theReconstructive Surgery Act inWashington DC.

At bottom of page: The GuzzoFamily poses with Cher duringher World Tour.

teasing can happen toanyone, but some

research indicates that chil-dren with disabilities are ata greater risk because teas-ing is usually about a visi-ble difference. Accordingto Ms. Joseph, social work-er at Bloorview’s neurode-velopmental program, “It’shuman nature to be curi-ous, so from an early agechildren with disabilitiesneed to be armed with theinformation to respond toquestions, stares, andunkind comments.”Parents and professionalsplay a critical role inpreparing and empoweringchildren with disabilities tocope with challenges oftheir chronic condition.

Talking with childrenabout their facial differencecan be a powerful begin-ning for more discussionsregarding feelings andexpectations for the future.It’s important to use devel-opmentally appropriatelanguage and conceptschildren can understand.For example, preschool agechildren may learn aboutdifferences best by under-standing differencesaround them. For example,parents can point out dif-ferences such as: somedogs have short legs andsome have long legs.Whereas school agechildren may understand

simple explanations, buthave questions about thecauses. Such as, “Do otherchildren have these differ-ences?” Is the conditionpermanent?” In order tocome to terms with thecondition, children needthe opportunity to askquestions, take an activerole in self-care, and learnhow other children copewith their feelings andcondition.

Adolescents need tomake the decision abouthow much or little infor-mation they want to dis-close to different people.Being involved in decisionsregarding possible optionsis also essential for this agegroup because this controlwill foster relationships,increase compliance, andimprove self-esteem.Children who learn, prac-tice, and utilize strategiesin teasing situations willcope more easily, and haveless feelings of helpless-ness. Ms. Freedman,author of Easing theTeasing: How Parents CanHelp Their Children says,“Teasing cannot be pre-vented, and children can-not control what otherssay; however, they canlearn to control their ownreactions.”

The following are effec-tive strategies developed byMs. Freedman to be uti-

lized in teasing situations,which can strengthen cop-ing skills. The self-talkstrategy encourages thechild being teased to thinkof positive attributes aboutthemselves. For examplethe child could say,“Whose opinion is moreimportant, the teaser’s ormine?” A teaser is seekinga reaction, so ignoring theteaser can also be veryeffective. Children shouldbe encouraged to role-playwalking away or pretend-ing like they are invisible toshow they are ignoring theteaser. Reframing is anoth-er way to cope with teas-ing. For example, if a teas-er is calling a child “foureyes” that child canrespond back with “thanksfor noticing my glasses.”Yet another coping strate-gy is using the “I” messagein which children expresshow they feel and whatthey want changed. Forexample, “I feel upsetwhen you call me braceface and I would like youto stop.” Other strategiesinclude visualization inwhich the child pretends tohave a protective shieldthat makes the teasingcomments bounce off.Sometimes adult interven-tion is necessary so chil-dren need to know it isokay to ask for help.Strategies that are effective

in one teasing situationmay not be in all situations.It is important for childrento practice possibleresponses to teasing thatthey plan to utilize in teas-ing situations.

Tips for parents to helpchildren cope withdifferences• Show your love and

acceptance of your child’sfacial difference by smil-ing, being physicallyclose, touching yourchild, especially his or her face and by makingeye contact.

• Tell your child about theirfacial difference in sim-ple, honest words theycan understand, empha-sizing it’s nobody’s faultand at the same timepointing out strengths.

• Support your child’sefforts in developingfriendships by encourag-ing sharing, giving,fairness, kindness andconsideration.

• Help your child make asimple plan to respond toquestions or comments.A simple, matter of factexplanation such as “Iwas born this way” or“This is just the way Iam” is sufficient for most children.

• Brainstorm together a listof possible questions toanticipate from children:

4

empowering children to cope with teasingby Amy Dodge, Child Life Specialist, North Texas Hospital for Children at Medical City of Dallas

see teasing, page 5

“How did it happen?”“Can I catch it?” “Whatis it?” “Will it go away?”

• Help your child under-stand they are not aloneby introducing him/her toother children who sharesimilar experiences.

• Children need the controlof how much or littlethey want to disclose todifferent people depend-ing on how they feel atthat time.

• Communicate with yourchild’s teacher through-out the school year toexplain any medical limi-tations and ways toenhance learning.

• Discuss with your childwhy some children askquestions or make com-ments about their differ-ences. Help your child tounderstand for the mostpart other children arejust curious and do notmean to be hurtful.

• If your child is teased,help him or her to prob-lem solve how to handlethe situation with a posi-tive response.

• Practice and role-playwith your child differentstrategies to use in teas-ing situations.

• Allow older children anactive role in surgicaldecision-making to helpyour child feel he or shehas a say and that theiropinion is valued.

• Your young child maywant to present informa-tion such as a show andtell session in their class-room about their facialdifference.

• It is human nature toprotect your child fromstressful situations; how-ever, when children trynew things they gainconfidence and obtainthe skills necessary to besuccessful in life.

• Consult with a child psy-chologist or social workerfor additional supportand resources.

Books for children andparents• The Berenstain Bears and

Too Much Teasing byStan & Jan Berenstain

• Chrysanthemum by KevinHenken

• Anansi and the TalklingMelon by Eric A. Kimmel

• Princess Penelope’s Parrotby Helen Lester

• Snail Started It by KatjaReider & Angela vonRoehl

• Easing the Teasing:Helping your child copewith name-calling,ridicule, and verbal bully-ing by Judy S. Freedman

• Bullies are a Pain in theBrain by Trevor Romain

• What to do...when kidsare mean to your child,Parenting Guides, vol. 1by Erin McCoy

5

• How to Handle Bullies,Teasers and otherMeanies: A book thattakes the nuisance out ofname calling & othernonsense by Kate Cohen-Posey, & Betsy A. Lampe

• Stick up for yourself.Every Kid’s Guide toPersonal Power andPositive Self-Esteem byGershen Kaufman, & LeuRaphael

ReferencesBloorview MacMillanCentre, 2001. PreparingKids for Teasing.

Freedman, J.S. 1999.Easing the Teasing: HowParents Can Help theirChildren.

Pope, A., 2003. Advice forParents: Helping Childrento Tell Peers.

Snyder, H., 2003. WhatParents Should Knowabout Self-Esteem.

kidshealth.org.

give a gift…in honor of a loved one thisholiday season

you can give a gift toCCA in honor of a loved one. What a

great way to make a per-son feel good, and make adifference, this holiday sea-son. Maybe have the kidsgive up one gift for them-selves and donate in honorof someone else — getcreative! We will acknowl-edge your donation andnote “in memory of” or“in honor of” on a card tothe gift “recipient.”

year-endcontributions did you know…

cash donations to CCAcan be made by credit

card anytime throughDecember 31st. The IRSconsiders the date thedonation was charged toyour card as the contribu-tion date even though thebill won’t come due untilJanuary.

Source: Financial Literacy Center

We apologize to those of you who didn’t receive

your newsletter in August. We are working on the

problem. Remember you can always go to CCA’s

Web site www.CCAKids.com and download the

latest issue.

teasing, from page 4

6

the date’s set. The bike’sbeen ordered. The

schedule’s coming togeth-er. Now we need yourhelp! We need sponsors/underwriters for our yearlysummer fundraiser, ourCher-autographed Harleyraffle and motorcycle rides.

Several opportunities toget your corporation’sname in front of thousandsof bikers and the commu-nity at large are describedbelow. We’re looking forcorporations that want tobe involved with making adifference in thousands ofkids’ lives, while gettingextensive exposure and PRfor your company. TheBlack Hills MotorcycleRally averages morethan half a million peo-ple in attendance daily.And you know bikers couldbe anyone — your neigh-bor, doctor, CPA etc.

Your corporate sponsor-ship helps underwrite theHarley Raffle, as well as thetwo rides we will be con-ducting in 2004: BuffaloChip Campground ownerRod Woodruff’s Rod’s Ridefor Cher’s Kids, and CCA’sInaugural Women’s Ride.

Title sponsor$50,000 • One $50,000 sponsor for

complete title rights ortwo $25,000 sponsors toshare spotlight

• Event named for TitleSponsor: “(Your name)Raffle/Rides for Children’sCraniofacial Association.”

• Name in all press releases• Name prominently placed

on printed materials• Name prominently placed

on CCA web site• Five “Rod’s Ride for

Cher’s Kids” registrationsand five Women’s Rideregistrations, if appropri-ate (includes ride, dinnerand gift bags)

• Your promotionalmaterials at point-of-sales displays

• Ten event T-shirts

Gold Mine sponsors$20,000• Name placed on printed

materials• Name placed on CCA

web site• Three “Rod’s Ride for

Cher’s Kids” and ThreeWomen’s Ride registra-tions, if appropriate(includes ride, dinner andgift bags)

• Your promotionalmaterials at point-of-sales displays

• Six event T-shirts

Silver Mine sponsors$10,000• Name placed on CCA

web site• Two “Rod’s Ride for

Cher’s Kids” and TwoWomen’s Ride registra-tions, if appropriate

(includes ride, dinner andgift bags)

• Your promotionalmaterials at point-of-sales displays

• Four event T-shirts

Prospector Sponsors$5,000• Name on point-of-sales

displays• Two “Rod’s Ride for

Cher’s Kids” and TwoWomen’s Ride registra-tions, if appropriate(includes ride, dinner andgift bags)

• Two event T-shirts

more corporate opportunities for 2004

t The KlubHouseKids areconcerned about and

want to make a differencein their community.

This group is dedicatedto holding an annualfundraiser to raise aware-ness of kids with craniofa-cial conditions and raisefunds to support CCA pro-grams and services.

Does this sound likesomething you’d like to do?Well, in April 2004 you willhave a chance. The charterchapter of KlubHouseKidsinvites you to try out beinga KlubHouseKid for themonth of April. TheKlubHouseKids will spreadawareness and sell raffletickets for a trip for four toDisney World! The grand

prize will include airfare,hotel and Disney Worldtickets.

Sound like fun? Want tohelp or know some kidswho’d want to help? Get afew of your friends togeth-er and be a KlubHouseKid.If you have fun helpingothers and want to start aKHK club, we’ll help youget started. If you justwant to help CCA duringthe annual event you cando that too.

For more informationabout the raffle, email Janaat JButera@ccakids.com

For more informationabout the KlubHouseKids,see page four of the Spring2003 CCAnetworknewsletter on ccakids.com.

KlubHouseKids

financialassistance

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 appli-

cation at 1-800-535-

3643. All we ask is that

you apply at least four

to six weeks prior to

your next trip.

7

ccabikernewsspecial insert to the newsletter of the children’s craniofacial association Fall 2003Cher—Honorary Chairperson

empowering and giving hope to facially disfigured individuals and their families

2003 harleywinner

our 2003 Raffle is over.Steven Lopriore of

Oxford, MA is the luckywinner of a Black, 100thAnniversary edition HeritageSoftail® Classic autographed

by Cher! Another on-line ticket buyer (5 for $20) Stevedidn’t remember entering at first. It didn’t take long forthe fun of winning to take hold of Steven, his wifeDarlene, and their kids. Steve’s own words about winning:“It’s beautiful. It’s a real dream come true for me. Whenfamily and friends see it they can’t getover the fact that I won it. I’ll alwaysremember the reason for the raffle.”

Congratulations Steve!

cCA values its volun-teers who generously

give their time and talentsto create awareness andraise much needed fundsfor programs and services.We worked throughout theyear on our Harley Raffle(Cher signed the gas tankof a 100th anniversaryHeritage Softail), and alongthe way we encounteredmany selfless, helpful folks:

The Eagle Riderpeople, especially Darius“Snowman” Blake, got us passes and let us set upnext to their booth to sellraffle tickets at the AustinROT (Republic of Texas)Motorcycle Rally.

We were invited to theLonestar Corvette Clubfestivities at the TexasMotor Speedway outsideDallas in Justin, TX, to selltickets at their annualgathering.

The Buteras and theirfriend, Nancy at Pier 121at Lake Lewisville, TX, letus sell tickets to folks onthe dock.

We also held our annualride for Cher’s kids whileout in the Sturgis area forthe Black Hills Rally. Help

with items for our goodiebags for “Rod’s Ride”included in-kind donationsfrom Hal’s Harley-Davidson in New Berlin,WI, Karim Merali at theRadisson Hotel in RapidCity, SD, John “Bud” Curtisof CSC Distribution, LLC,in Waukesha, WI, FirstGold Casino, Deadwood,SD, Virchow Krause, LLP,Milwaukee, WI, PatrickJackson of Premier Cigars,in Brookfield, WI, RodWoodruff and BuffaloChip Campground.

Daredevil, KaptainRobbie Knievel jumped100 Harleys in honor of the 100th anniversary year

more extended family…

see friends, page 9

Robbie Goreckie with KaptainRobbie Knievel.

hello again! RobbieGorecki here, with

your report on all the CCAhappenings in Sturgis, SD.Since this is the 100thanniversary of Harley-Davidson, we raffled off aspecial 100th-anniversaryedition Heritage SoftailClassic. Cher signed thegas tank, which made iteven more special.

We arrived at the BuffaloChip Campground, our“home” for the week,where Rod “Woody”Woodruff, his wife Carol,daughter Toni and theentire staff treated us likefamily. Woody’s right-handman and grounds manag-er, Dave Vice, had amotorcycle waiting therefor me to use. So, now Ican say I learned to “ride”at the Chip. De Arnoldmade me a biker vest justlike Dave’s to wear, and I

had a great time helpingDave and motoring aroundthe campground, meetingnew friends and gettingthem to come to our CCAbooth and buy raffle tickets.

Shortly into the week,we made a video commer-cial, with the help of TomKingsbury, to run on thebig screens between showsat the Chip. This year MikeSanborn made sure wehad the local radio stationsbehind us full force, alongwith New York Myke,talking up our raffle. Andto benefit CCA, KaptainRobbie Knievel celebratedthe 100th anniversary witha world record jump over100 Harleys! Thankgoodness for Steve’s crewwho helped us set up forKapt. Knievel’s jump.

Friday before the jumpwe had Rod’s Ride forCher’s Kids. This year our

grand marshal was Lt.Shane Osborn, a militaryhero, and he broughtalong his wife, Teri. Theride began at SheridanLake Marina, where ournew friends KarenAnderson and Mike Yorehelped us stage the ride,and ended with a buffalopitchfork fondue dinner atthe Chip.

After the ride and jump,people got to meet RobbieKnievel. It was pretty cool.Brad, who was backstage,let me meet some of theperformers like MarkSlaughter and AliceCooper. Each night, ourfriend, Bonnie hauled ourstuff out to our booth andback again on an ATV!

Our regular volunteers,Greg Patterson, Mikeand Mary Parsons, LisaSharp, Tammy Van Ness,Kevin Braden, JodyKlemann (another CCAmom) and her whole fami-ly helped sell tickets andhand out free T-shirts.Terry Schmidt coordinatedwith Dave Smith Motors,

a major sponsor withWoody, to provide theshirts to give away withticket purchases. Of course,Megan Bennett our localvolunteer had us out atSpearfish again to sell tick-ets at the B&B/Back PorchBar & Grill with Lelandand Teri Ruzicka and mygood friend Fred Salafrom the Frisco HellsAngels. The Petersens atthe Pierre Harley dealer-ship provided a replica bikefor First Gold Casino inDeadwood, and all myfriends there includingMarilyn, Brad, Kim,Derick, Ann, Shari andthe entire staff sold ticketsfor us during the week.

I met lots of great peo-ple, especially all of thosehelping us raise funds andall of you who bought araffle ticket. We plan onanother great fundraisernext summer, and I will behappy to tell you all aboutit then!

Robbie Gorecki, CCAAmbassador to Sturgis

ambassador’s report

8

of the Harley-Davidsonmotorcycle. He asked for a $100 donation forCCA from the owner ofeach bike!

While we were out inSturgis, Josh Mueller,who’d been on our ridethe previous summer, andhis friends at CalhounStation in New Berlin,stayed back in theMilwaukee area and held aPoker Run for CCA.

Many families wentabove and beyond in ashort time period to sellraffle tickets, especiallyDonna Shea, KristineDale and Casey Deakins.

Thanks to everyone hereand all who participated.Welcome to the family!

friends, from page 7

9

Above: Kaptain Robbie Knievel prepares to makehis world record jump over 100 Harleys.

Above: Some of the bikes all lined up for the jump.

Above: CCA’s Team Sturgis. Left to right: ExecutiveDirector, Charlene Smith; CCA Ambassador, RobbieGorecki; CCA Office Administrator, Annie Reeves;Volunteer, Greg Patterson; Development Director,Jill Gorecki.

Left: Char and Jill work late intothe night selling raffle tickets.

Above: We couldn’t sell nearly as many tickets without ourvolunteers! Left to right: Kevin Braden, Tammy Van Ness, Mary and Mike Parsons

Left: Jill snagsa donationfor thegoodie bagshanded outat Rod’s Ridefor Cher’sKids.

Above left to right: Char Smith; New York Mykeof San Diego Harley Davidson; Jill Gorecki.

10

picking up the pace

pace American,Inc., was again a spon-

sor for our HarleyRaffle, loaning usthe use of a newLegacy enclosedmotorcycle trailerto haul our 100thanniversary editionHeritage Softail. We picked up the trailer in Utah, then thebike in San Diego, then went through Las Vegas, Denver,Dallas, Austin, Longview, Kilgore, Justin, Lewisville,Daytona Beach and, finally, to Sturgis. Having the bike ondisplay while selling tickets at all the different venues reallyhelped sales. Our volunteer driver hauling the bike evenreported being stopped for raffle tickets on the way toSturgis! Thanks again, Pace American!

sturgis 2004

while 2003 Black HillsMotorcycle atten-

dees are still getting thedust off their chaps, CCA isfull throttle planning forSturgis 2004! Next yearCCA will once again rafflea beautiful Harley-DavidsonHeritage Softail®, and holdour annual Rod’s Ride forCher’s Kids, hosted by thelegendary Buffalo ChipCampground owner RodWoodruff. The ride willtentatively take place onWednesday, August 11,2004. To insure you havethe most satisfying experi-ence and view the mostbeautiful scenery, we haveassembled a committee ofveteran riders to plan theride, including Rod“Woody” Woodruff, SanDiego Harley Davidsondealer and host ofAmerican Cycle TalkInternet radio show, NewYork Myke, KaptainRobbie Knievel and CCA’sown volunteers TammyVan Ness, Kevin Bradenand Greg Patterson.

And hold onto your hel-mets… On Tuesday, August10 (tentative date), CCAwill hold the inauguralWomen United onHarleys (or any other bike)Ride. Yes you heard it — aride for women in the dri-ver’s seat! CCA strives toteach children with facialdifferences to be confidentand independent. Womenwho ride bikes demon-strate independence, so it’sa perfect fit. We areassembling a committee ofbiker ladies who will puttogether a ride that will belots of fun and help kids atthe same time! We are alsoworking on some surprises,so stay tuned for details!

You don’t want to missout, so mark your calendarnow and plan to join us onone or both of the ridesduring rally week, August7 to 14. It promises to bethe highlight of your 2004Sturgis experience!

Check our Website tobuy 2004 raffle tickets!

darin and Dede Dankelson of CommerceTownship, MI, are this issue’s famed fundraising

family! Their son, Peter, was born with GoldenharSyndrome. In August they held the first annual “Pete’sScramble for CCA” at theBeacon Hill Golf Course intheir town. This first effortwas a “hole in one,” nettingmore than $1,400 for ourcharity as well as a lot of funand more awareness for theircommunity. Hats off andmany thanks to theDankelsons for getting inthe game and “scrambling” tohelp! If anyone is interested inlearning how they went aboutplanning the golf outing, please let us know.

families raising funds pete’s scramble for cca

toll-free hotlineCCA provides a toll-free 800 number so families don’t

have to pay for a long distancephone call. It is very possible that

without referral to a cranio-facial center, affected chil-dren would not receivethe comprehensive, quality

medical care imperative tooptimum results. Via the toll-

free hotline CCA also provides muchneeded educational materials and emotional support.

doctor referralChildren's Craniofacial

Association refers to the fullmembers of the InternationalSociety of CraniomaxillofacialSurgeons. These surgeonshead teams of specialistsspecifically trained in the sur-gical management of prob-lems involving the face andhead. Centers with craniofacialteams working together havethe advantage of greater experi-ence to provide comprehensive,quality care, which leads to bet-ter results and fewer complica-tions. In addition, ongoingresearch at these centers offers patients the latest break-throughs in treatment. As there are only a few experi-enced teams in the country, it is quite common for familiesto travel long distance to get the best care. A list ofthese surgeons may be obtained by calling CCA’soffice, or from our Web site www.CCAKIDS.com.

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

ccaprograms

11

1-800-535-3643

12

What is the REDdevice? The RED device isnot red; it is actually pur-ple. It gets its name from:rigid external fixationdevice and is used to bringparts of the face forward.

What are some of theconditions that doctorsuse the RED device totreat? The RED device wasfirst developed in Chicagoby two doctors, Drs. Polleyand Figueroa, who werelooking for a better way totreat children with cleft lipand palates. Some childrenborn with a cleft lip andpalate require surgery inteenage years in order tobring the upper jaw for-ward. In these children, itcan be very hard to get thejaw far enough forward,so, the RED was developedfor this purpose.

In 1998, I made a fewsmall changes to the deviceand started using it to treata different, younger groupof children who were bornwith craniofacial dysostosis(this is a general term thatincludes syndromes such asApert, Carpenter, Crouzon,Pfeiffer, Saethre-Chotzen,etc.). In addition to thecraniofacial dysostoses, Ihave also used the RED totreat bifacial microsomia,as well as a number ofother conditions.

How does the REDdevice work? In additionto just bringing the upperteeth forward, which issometimes necessary forteenagers born with a cleftlip and palate (this opera-tion is called a LeFort I), theRED is now used to bringthe entire midface forwardin an operation called aLeFort III. This operation isjust about always necessaryfor children with Apert,Crouzon, Pfeiffer, etc. Themidface is area betweenthe top of the nose, (or thebridge, where glasses sit),down to the upper teeth,including both cheekbones.For children born with oneof the craniofacial dysos-toses, the LeFort III is usual-ly performed somewherebetween ages 5 to 8,depending on a number offactors. I have found thatthe RED has greatlyimproved the results inthese children and is muchbetter than either doing aLeFort III without the RED,or using bilateral distrac-tion devices that can beplaced on either side of the cheekbones, under the skin.

The RED device looks likea horseshoe, which isattached to the head withpins that go through theskin into the skull. Oncethe device is on, most chil-dren do not feel any pain,

unless it is necessary totighten one of the screwsgoing into the head. A barhangs down vertically infront of the face. Attachedto this bar, near themouth, are two wires thatattach to the upper teeth(either by braces or adental splint).

The RED is put on in theoperating room, after asurgeon has performedeither a LeFort I or LeFortIII. After the operation, theparents are taught how toturn two screws, twice aday. As these screws turn(children tell us that thisdoes not hurt), the bonesof the face are slowlymoved forward. After theface has been brought for-ward the correct amount,the RED is left on (withoutturning any screws) forabout a month to allowthe bones to heal in thisnew location. The child isthen usually brought backto the operating room fora short 15-minute proce-dure to take everything off.

What are some of theproblems with using aRED? The RED device is stillrelatively new, and only afew doctors have had anysignificant experience usingit. This means that forthose doctors who haveonly used the RED on afew children, the complica-

tion rates may be higher.Some children find it hardto wear a device as big andbulky as a RED for the 8-week treatment period,others seem to do just fine.There are also some other,very rare, complicationsthat may occur and theseshould be discussed withyour doctor.

What are the advan-tages of using the RED?In the very first publicationof this technique, back in2001, I found that the REDwas able to bring the mid-face much further forwardthan could be done usingthe standard LeFort III(without the RED). It wasalso found that using theRED did not raise the com-plication rate over that ofthe standard operation.Since that first report, Ihave found that by doingthese operations using theRED, almost 2 hours areshaved off the operation.Moreover, the complicationrate has fallen even lower,and children now onlyspend a total of 3 to 4days total in the hospital.

Should my child havean operation with theRED? For children needinga LeFort III, I recommendusing the RED onlybetween the ages of 5to12 (doing a midfacial

the RED device by Jeffrey Fearon, MD

see RED, page 13

observed Macey and saidshe’d have the doctor oncall come and observe. Thedoctor noticed thatMacey’s ears were set lowand did a test to make sureher liver was working prop-erly. The test came backfine, so the doctor said wejust have to see how shedevelops over the nextyear. The nurse thoughtthat this doctor wasn’tproactive enough and,since Macey had a lowtemperature, recommend-ed we stay another dayand see her pediatrician.Macey’s pediatrician ran achromosome test and a CTscan of her head.

We found out that Maceyhad Craniosynostosis. Thenext day she was taken toNICU for jaundice andfeeding problems. We weredevastated by everything,to say the least.

After three days in thehospital, Macey camehome. After consultingwith two craniofacial teamsand doing lots of researchon the Internet, we sched-uled her first operationwith Dr. Fearon, a plasticsurgeon and Dr. Sacco, aneurosurgeon.

Macey’s operation beganon January 8, 2003 at 7:30am. Shortly after the inci-sion, the doctor stoppedand came to talk to us. HerCO level was 140+ andcould not be controlled.She was taken to PICU and

put on a ventilator. OnJanuary 14, Macey receiveda tracheotomy. Her rightlung collapsed during theoperation, so she needed achest tube. About fivedays later, her breathingfailed again. An otolaryn-gologist said that herairway was barelyopen. The next daythe doctor fit Maceywith an adjustabletracheal tube. It seemed towork, so she spent thenext two months in thehospital on a ventilator.

On February 24, around4:00 am, Macey went intocardiac arrest, and theyweren’t able to get her tobreathe. Her tracheal tubebecame stopped up. Atthis point the nurses andthe social worker becamevery concerned about us —we had no place to staywhile in town.

The social worker told usabout CCA. Char Smithcame over and assisted uswith lodging and food.What a blessing! This tooka burden off of us, and wewere able to focus onMacey getting better.

On March 6, Macey wastaken via CareFlite toCincinnati Children’sHospital. She underwenttrachea reconstruction sur-gery. With many prayers,Macey did exceptionallywell and was able to gether tracheal tube taken outand also able to get off theventilator. After five weekswe took Macey home. An

macey, from page 1

advancement before 5should be reserved for veryunusual circumstances, andin very young children, theskull may not be strongenough to support theRED). After age 11 or 12, italmost always makes moresense to do a standardLeFort III.

Will using the REDsave my child fromneeding the usual sec-ond LeFort III in teenageyears? One of the mainreasons that I developedthe RED technique for chil-dren needing LeFort IIIswas to try to get the mid-face far enough forwardwith the first operation,that the traditional secondoperation in teenage yearscould be avoided. To myknowledge, I was the firstsurgeon to perform aLeFort III using a RED, andthis was done in early1998. This means that thelongest follow up is noteven six years. At this pointin time, it seems that theolder a child is when he orshe gets the first LeFort III,the more likely it is that thesecond LeFort III can beeliminated. There are anumber of complicatingfactors that affect thisdecision and these need to be discussed on a caseby case basis with yourown doctor.

insurance company will notpay for a plane ride home,so CCA helped us again.

Macey was home but inand out of the local hospi-tal for three weeks. Then itwas time to return toDallas for her frontal orbitadvancement craniofacialsurgery. CCA helped onceagain with transportationand lodging. CCA alsohelped with traveling toher post-opt appointmentand her posterior cranialvault surgery.

We are very grateful forthe support that CCA hasgiven to us. In addition tothe financial assistance,CCA shared information,prayers and time. JanaButera (CCA’s programdirector) even waited withour family during Macey’scraniofacial surgeries. Maceyis now 11 months old andrecovering from her secondsurgery. We pray that CCAwill continue to receivesupport and donations tohelp other families like us.

Thanks,The Atkins family

13

RED, from page 12

*Listed are monetary donations since April. We are extremely grateful for these and all prior dona-tions, raffle ticket purchases, fundraisers and in-kind donations not recorded here.

Gifts from Individuals

CCA Supporters(up to $100)

Robin AdamsAmerica’s Charities individual

donationsJoe BousamraAlden & Karen Briggs Thomas & Sharon BrockhausTrevor BryanGary BundenthalJana ButeraJim & Beverly ButeraLarry CarpenterPhil & Kathy CharterisBertha ChatamDan & Linda CotterDale DankelsonDarin & Dede DankelsonDave DankelsonArthur & Sandy DeakinsHenry FerracaneWalter & JoAnn FloresCheryl FredaMike & Lynn GogolaS. GoldmanJane L. GoodmanMark GrumetRich HaleKevin Eugene HaughDon JardineDon Jardine Jr.James JardineSally E. JohnsonBrian KernAl KernMichael & Kathryn KevanyArthur & Mary LecoqAgisilaos ManickasSteven MarshallJoe & Averill MeadowsDon MeierDana L. Mollohan

14

donors, april through september 2003*

even used a little roundmirror attached to a longstick to look under the van(for bombs, I guess).Finding none (thank good-ness!), they allowed us topark on Capitol Hill reallyclose to the building.

Then we hit a snag.Someone had thrown up inthe guardhouse at theCapitol, and it was closeddown for”hazardous wastedecontamination.” All ofour security information wason the computer, which wasin the locked guardhouse.Mr. Ayers had to get intouch with someone insidethe Capitol to get us in.

Most everyone went upthe big steps and in thebuilding, but a few peopleand I had to go to thewheelchair entrance on theside of the building. We allregistered and were givenidentification tags. Thenwe went up the elevator to meet everyone else forthe forum.

Our meeting was held inthe LBJ Room. It’s calledthat because it was whereLyndon B. Johnson had hisoffice. It’s really unusual toget to use the LBJ roomsince it’s only used forspecial occasions.

The hearing started withMr. Ayers talking aboutwhy we were there. Somepeople talked about med-ical things relating to the

washington dc,from page 3

now you can do somefeel-good spending

for the holidays! CCA isregistered on Schoolpop.This means that at least1% of everything you buycan go to the school oryouth charity (CCA) of yourchoice—at no additionalcost to you!

It’s simple to sign up. Just visit schoolpop.comand enter Children’sCraniofacial Association,Dallas, TX 75240.

charge for cca! holiday* news we can all use!

(Remember to also down-load a “shopping buddy”that will ensure your pur-chase is credited at anyparticipating merchantswhile shopping online.)

You’ll be asked if you’dlike CCA to know aboutyour contribution. Pleaseindicate, “Yes,” so we canreport back on how muchyou all charged for CCA!

You’ll see that almosteveryplace you shop forthe holidays is a participat-

ing merchant. This includesin-store, online and catalogshopping. Some grocersand magazine subscriptionsalso qualify.

This is the easiest“giving” you will ever do!And the giving is not justfor the holidays — you can charge for CCA all year ‘round!

If we all do this, themoney given to CCA willadd up fast. So happyholidays — and happyshopping!

*AND ANYTIME, ALL YEAR‘ROUND!

Jason & Marie MooreTodd & Clemy MooreElizabeth & John MoultonMina MulveyFrank PrimmAnnie ReevesJere RobertsonJosef RoskoLoretta SchafferMike & Lisa SchneiderTammy SylvesterMargaret SyringSteven & Karen TerryUnited Way, Directed DonationsCharles VolponeKirk & Madeline Zuckerbrow

CCA Friends($100 +)

Betty B. BurnsM. Joseph CeliJerry & Ruth DankelsonJohn & Carrie FollettFred FreemanRoland & Dorothy FreemanJill GoreckiRenee GrastyCharles HaughIan Jackson, MDJames & Kathryn KempBrett MaceBen C. MaibachWayne & Julie NashJim O’SullivanHarry & Cleopatra PaganisC. Stephen & Ourania Tsorvas

CCA Extended Family($500 +)

Karen HartsteinRoger & Carolyn LambLeonard & Ann Wolf

CCA Sponsor($1,000 +)

AnonymousJohn & Charlene SmithBrad ThompsonSepehr Egrari, MD

CCA Benefactor($5,000 +)

CherLorettamarie Katsafouros bequestHazeldeane Pritchard bequest

Memorials/In HonorGifts Alden & Karen BriggsJim & Beverly ButeraM. Joseph CeliAnthony & Sandra DeakinsCheryl FredaRoland & Dorothy FreemanJane L. GoodmanCharles HaughKevin Eugene HaughJames & Kathryn KempMichael & Kathryn KevanyHarry & Cleopatra PaganisJere RobertsonC. Stephen & Ourania TorvasCharles J. Volpone

Corporate/FoundationGifts

CCA Corporate Friends(up to $1,000)

AlbertsonsCalhoun StationFred Freeman InsuranceKroger

Metal Parts & EquipmentCompany

Pacific EyecareSafeway, Inc.Sarah Hall Productions Inc.Southcoast Health SystemVerizon FoundationWestern Diversified ServicesWhite Oak Press

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

SynthesWal-Mart Foundation

CCA Corporate Partners($5,000 or more)

The following are cor-porations donating aportion of the ticketproceeds for Cher’sfarewell tour sinceApril, 2003.

Bill Graham EnterprisesCellar Door of The CarolinasCellar Door Productions of

MichiganCellar Door Productions of

VirginiaDLC CorporationElectric Factory ConcertsMagic City ProductionsSFX Music ClevelandSFX Target Center Arena SMG Van Andel ArenaService America CorporationSouthern Promotions, Inc.

see 2003 washingtondc, page 15

15

chair, from page 1

difficult to take. She want-ed to have her conditioncorrected, but was told bysurgeons that the neces-sary operations would notbe covered by insurance.Donna accepted her condi-tion, went on with her life,got married, had two won-derful children and now isa substitute teacher.

Not long ago, Donnaread in this newsletterabout CCA’s efforts to win passage of theReconstructive Surgery Actof 2003—a measure thatwill guarantee insurancecoverage for craniofacialpatients. She decided thatthis was a cause worthfighting for—and on amore personal level—goingpublic about.

Donna contacted herlocal newspaper and televi-sion stations to tell themabout the Act and howimportant it is. Her localnewspaper did a majorstory about her accompa-nied by a three-columnphoto. The article evenincluded the contactinformation about the U.S. Senators andRepresentatives fromAlabama who should becalled and written to urgepassage of the Act.Likewise, her local televi-sion station did a very posi-tive segment on her fightfor fair treatment by insur-ance companies. Donna isalso gathering signatureson a petition that will bepresented to Congressabout the legislation.

Donna Gossett is nolonger interested in having

operations to correct hercondition. She is not onthis crusade for herself, butrather for others who fol-low. She had been living aquiet family life and hadaccepted her facial disor-der. It took a great deal ofcourage for her to go pub-lic, but she is happy shedid. Now people stop heron the street to tell herhow important her crusadeis. Donna is making adifference.

Another person who hasmade a difference is SallyLongroy. Sally is an attor-ney who served on CCA’sBoard and was the sourceof much sage advice forour organization. Becauseof time commitments, Sallyhas resigned from theBoard. We will miss hergood counsel on theBoard, but can happilyreport that she has agreedto continue to provide probono legal work for theAssociation. We greatlyappreciate her generosityand ongoing commitmentto CCA.

Another former Boardmember who continues tomake a difference is DianaSweeney. Many CCA fam-ilies know Diana and havebenefited from her dedica-tion to the Association andher work at Children'sHospital in Philadelphia.Diana continues to serve asa volunteer with CCA andis deeply involved in keep-ing our network of familiesin touch with each other.

Tim AyersCCA Board Chair

bill. Then the Congressmanfrom Arkansas spoke. Next,CCA families told what it islike to have a craniofacialanomaly. That was reallyinteresting because I knewsome of them, but we hadnever really talked aboutthings like that. Whenwe’re together at retreats,we just like to have fun.

Finally, my Dad, Momand I told our story. I usedmy Pathfinder (augmenta-tive communication device)for my part of the story.Since I don’t speak clearly,the Pathfinder talks so oth-ers can understand what Iwant to say. I had funtelling my story. Everyonereally laughed when Iadded monster soundeffects when I spoke aboutsome people thinking peo-ple with faces like minelook like monsters. Mostly,our family talked abouthow lucky we have beenthat insurance has paid formy 22 surgeries. We wantpeople to know that someinsurance companies dorecognize that craniofacialsurgeries are necessary.

I was a little disappointedbecause not very manysenators or representativeswere there.

After the hearing wasover, we were in the halland Sen. Arlen Specterfrom Pennsylvania came totalk with us. He asked whatbrought us to Washington.

washington dc,from page 14

We talked with him aboutthe bill and gave himcopies of the information.

Then, our family and theSeitz family ate in theSenate Dining Room. Itwas cool because I sawSenator Jeffords and hiswife. I had met him in1997 when I was at theWhite House withPresident Clinton for thesigning of the Individualswith DisabilitiesEducational Act. Senatorand Mrs. Jeffords came toour table and talked withus. So, we told them aboutthe bill, too.

My family tried to seeour Congressman, JohnHostettler, from Indiana totalk about the bill. Whilewe were there, the presi-dent of the company myDad works for came in. Wewere surprised to see eachother. Then one ofCongressman Hostettler’saides escorted us back tothe Capitol building. Hetook us through the tun-nels underground, which Ienjoyed a lot.

From there we went backto the hotel and began ourfun 2003 CCA Retreat!

Honorary Chairperson:Cher

Board of Directors:Tim Ayers, CHAIRPERSON

Washington, DCTony Davis, Piedmont, ALSally Longroy, JD, Dallas, TXBill Sims, CPA, Dallas, TXRobert Vargas, Dallas, TXRobin Williamson, Carrollton, TX

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:Jana Butera

Development Director:Jill Gorecki

Office Administrator:Annie Reeves

Business Manager:Cathy Evans

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

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

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cCA is fortunate to have a group of volunteers who prepare the Newsletter formailing each quarter. We would like to recognize and sincerely thank them for

their dedication and time.

From left to right: Greg Patterson, Phil Patterson, Ginger Morrone, CCA Program Director–Jana Butera, Jim Butera, Tina Webb, Beverly Butera, JoAnn Turano, Lily Salvato. Not pictured: Rudy Salvato

Thanks, forall you do!