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By BOBBY BURCHHerald Staff Writer
Earlyinhersixth-gradeyear,ShelbyJordanhadgrownaccus-tomedtothepain. Thefamiliarpressureinherhead,thestingsinherupperback,theconstantthrobbingnearthebackofherneck—justanotherheadache,shethought. Thenuisanceappearedsudden-ly,Shelbysaid,andwouldlingerforhours.She’dneverexperiencedheadachesbefore—whynow?Moreimportantly,Shelbywon-dered,whatwasthecause? “[Theheadaches]wereconstantandalwayshurtinthesamespot,”Shelby,now12,said,motioningtothebackofherneck. Herheadachesseemedtoworsenthroughouttheyear,shesaid,andoccurredmorefrequent-ly.Eventually,Shelbybegantofeelsharppainsinhershouldersandthroughoutherback.Thetorment,shesaid,wasworsewithoutexpla-nation. “Theyweren’tlikeregularhead-aches,”Shelbysaid. Notregularatall. Shelby’sbrainwasgraduallysaggingintoherspinalcanal.Amalformationofhercerebellum,thepartofthebrainthatplaysaroleinmotorandcognitivefunc-tions,forcedtheorgantomovedownwardthroughherskull,caus-inghersymptoms. Thecerebraldeformity,alsoknownasa“chiarimalformation,”wasobstructingtheflowofShelby’scerebrospinalfluid,thesubstanceinwhichthebrain“floats.”Certainstudieshavefoundtheconditioncancauserespiratoryfailure,whichkilledone-thirdofpatientsshowingsymptomsinareportpublishedbyCambridgeUniversity. Shelby’sbrainsaggedmorethan
ahalfinch—16millimeters—be-foresomethingcouldbedone.
Discovery Inmid-October2011,KimandScottJordantooktheirdaughtertothefamily’sphysician,whorecom-mendedthattheyseekaneurologi-calspecialist. TheadvicetookthefamilytoChildren’sMercyHospitalinKan-sasCity,Mo.,whereJordanwouldundergoaseriesoftests,includingmagneticresonanceimaging.TheMRIrevealedShelby’sbrainwas
restingonherfirstvertebrae,andthemalformationwasabout0.63inchesinlength,KimJordansaid. Thenewswasdevastating. “IwasatworkwhenIgotthecall,andIwasjuststandinginthehall,bawling,”KimJordansaid.“Itwasjustshock....[Theneurologist]said[themalformation]wasaboutfourtimesmorethanwhattheywantedtosee.” Therearethreemaintypesofchiarimalformations—CMI,IIandIII—whichvaryinseri-ousness,accordingtotheChiariInstitute,basedinGreatNeck,N.Y.Dependingontheseverityofthemalformation,itcanbefatal,al-thoughimprovedsurgicaloptionshavelessenedthatpotential.KimJordansaidherdaughter’smalfor-mation,however,wasunspecified. ScottJordansaidhealsowasstunnedafterlearningofhisdaugh-ter’scondition. “Itwassomethingthatwenever,everexpected,”hesaid.“Ineverthoughtinamillionyearsthat’swhatwascausingtheheadaches.Wethoughtitwasallsomethingdifferent,anditwassomethingjustclearoutoftheblue.” Sucharesponseiscommonwithmanyfamiliesthatencounterthemalformation,asitaffectsonlyabout0.0006percentoftheU.S.population,accordingtotheChiariInstitute.About3,500chiariopera-tionsareperformedeachyear,theorganization’swebsitereports. Shelby’sparentsstruggledwithhowtoapproachthesituation:toeitherletShelbyknow,poten-tiallycausinghermoreanxiety,orchoosetokeepitfromher. Theychosethelatteruntilthestressofthesecretknowledgebe-cametoomuchforthecoupletobear.
Aches expose brAin condition
Photos by Matt Bristow/The Ottawa Herald
Shelby Jordan, 12, and her brother Cooper, 4, swing on playground equipment at their home in rural Franklin County. Shelby enjoys swinging, but can grow tired easily because of her medical condition.
Summer season already casting
shadows at city pool. See Page 7.
iN THe sHADeCyclones opening
season today at Spring Hill.
See Page 8.
BAseBALL
ThursdayMarch 29, 2012Ottawa, Kansas
75 cents Volume 143, No. 63
12 PagesHeraldOttawaThe
THUrsDAy eDiTioN
Shelby Jordan, 12, reads an excerpt from the story she is writing about her experience having a chiari malforma-tion. She had brain surgery in Decem-ber in which a surgeon removed a section of her skull and one vertebrae. Shelby’s shirt reads, “I HAD BRAIN SURGERY, WHAT’S YOUR EXCUSE?”
HeraldTheOttawa
Community News. Community Connections.
By CRYSTAL HERBERHerald Staff Writer
Four out of five Frank-lin County Commissionersdon’tapproveofthecountyclerk’sconduct. Commissioners Wednes-day approved a resolutionformally censuring Frank-lin CountyClerkShariPerry. Theresolutionwas a pub-lic repri-mand ofPerry, whor e c e n t l ywas amongthesubjectsofaconfidentialhumanre-sourcesinvestigation.Thatinvestigationnowhasbeenforwarded to the KansasAttorneyGeneral’sOffice. “The document speaksfor itself,” CommissionerColtonWaymiresaidofthecensure resolution afterjoining with Commission-ers Ed Taylor, Steve Har-risandDonStottlemire topassthemeasure. Commission Chair Da-vidHood,thesoledissent-ing vote, said he opposedthe resolution because he“didn’tagreewithit.” The resolution’s main
pointsread: • The Conduct of theFranklin County Clerk,ShariPerry, isherebycen-sured by this CommissionasunbecomingoftheOfficeof the County Clerk and adistraction from the legiti-matebusinessoftheCountyandCountytaxpayers; •IftheClerkoftheCoun-typersistsinherapparentattempts to interfere withthe employment of countyemployees, the Board ofCountyCommissionerswilltakefurtheractionasnec-essary including the com-mencement of legal actiontoenjoinsuchconduct; •ThatretaliationagainstanyCountyemployee,forco-operating with the KansasAttorneyGeneralwillnotbetoleratedandwillbethesub-jectofitsownpromptinves-tigation pursuant to Countypoliciesandprocedures. The resolution was pre-sented to commissionersWednesdaybyKansasCity,Mo., attorney Kevin Case,wholedthepreviousinves-tigationintoanundisclosedhuman resources matterinvolvingPerryandanun-namedcountyemployee.
Officials voice disapproval of clerk’s conduct
4-1 voTe
By CRYSTAL HERBERHerald Staff Writer
The process isn’t work-ing, Shari Perry said, andshedoesn’twanttofightitanymore. Perry, Franklin Countyclerk, essentially steppeddown Wednesday from herroleasthecounty’sfreedomof information officer. Theotherdutiesassociatedwithherelectedcountyclerkpo-sitionremainunchanged. At her request, Frank-lin County commissionersWednesdaymorningsigneda resolution rescindingPerry’s freedom of infor-mation officer duties andappointed Lisa Johnson,
county administrator andcounselor,tofillthedutiesassociatedwiththerole. A freedom of informa-tion officer is responsibleforreceiving,assessingandsubsequently disclosinginformation in responseto requests. The KansasLegislature requires pub-licagenciescoveredbytheOpen Records Act to ap-pointalocalfreedomofin-formationofficer. Perry was appointed tothepositionbya2005reso-lution.Thecommissioners’Wednesday action repealsthatresolution.
Perry relinquishes county public information duties
APPoiNTeD PosiTioN
See INFORMATION, Page 2
Resolution censures county’s top election official
Perry
See RESOLUTION, Page 12
swinging with the chAllenges
See SHELBY, Page 12
402 N. Main • Ottawa, KS
785-242-5100AdvantageFordOttawa.com
ADVANTAGE
Page 12 The Ottawa Herald Thursday, March 29, 2012
Case more recently has been taskedwith investigating accusations made in ademand letter sent on behalf of Perry tocommissionersearlierthismonth.Thelet-terallegesviolationsofPerry’shealthpri-vacyrightsandrequestsliquidateddam-agesof$175,000.Italsothreatensalawsuitagainstthecountyifactiontocompensatetheclerkisn’ttaken. Casesaidhewasaskedbycommission-ers to prepare the censure resolution,which additionally states “the Board hasreceived multiple complaints addressingtheconductoftheFranklinCountyClerk.” SincePerryisanelectedofficial,com-missionershavenosupervisoryauthorityoverher.Therefore,acensureresolutionwas among their limited options for ex-pressingdispleasurewiththeclerk. CasetoldcommissionersMarch14thathisconcludedhumanresourcesinvestiga-tionfoundmanyallegationsagainstPerry—undisclosedtothepublic—tobetrue.That,coupledwiththecommissioners’in-abilitytoexercisesupervisorypowerovertheclerk,pushedhimtoforwardtheinves-tigationtotheKansasAttorneyGeneral’soffice. Wednesday’s censure resolutionrepeatsCase’searlierassertionaboutthetruthbehindmanyoftheallegations. Perryhasmaintainedshedoesnotknowthedetailsorsubjectoftheinvestigation,nordoessheknowtheallegationstowhichCase has referred. She said she spoke toCaseonlyonceduringthecourseofhisin-vestigation. Still,thelongtimecountyclerk,whosatquietlyastheresolutionwasreadWednes-day,saiditdidn’tsurprisehertolearnthecensureresolutionhadbeendrafted. “I figured therewasaresolutioncom-ing,”shesaidafterthemeeting.“Ifiguredtheresolutionwasgoing toaskmetore-sign, just because they don’t like me be-causeI’mavoiceforthepeople.” Perryidentifiedthe“they”towhomshereferredasCommissionersTaylor,HarrisandWaymire. After reading the full text of the cen-
sure resolution shortly after the meet-ing, Perry said she not only thought thecommissioners’ action was an attempt tosilence her, but also that it infringed onherFirstAmendmentrightoffreedomofspeech. She said she always has tried tomaintain transparency in county govern-mentandsaidsomepeopledon’tlikethat. Perryalsosaidshethoughtthecensureresolution came in retaliation to her de-mand letter and possible lawsuit againstthecounty. “The investigation was over until theygot the letter from my attorney regard-ing [Health Insurance Portability andAccountabilityActviolations]andthenitall started back up again,” she said. “SoI would say that’s retaliation. There’s nootherwayaroundthat.” Fornow,Perrysaid, she’snotgoing tochangeanythingabouthowsheconductsbusinessintheclerk’sofficeinresponsetothecensureresolution.ShesaidnoneofherstaffhasbeeninterviewedforCase’sinvestigation, adding that there are twosidestoeverystory. Wednesday’s censure resolution isn’tthefirsttotargetPerry’sactivitieswithincountygovernment. As a result of Case’s earlier investiga-tion,commissionersadoptedaresolutioninSeptemberbarringdirectcommunica-tion between the Franklin County clerkand the county’s ambulance department.Thatresolutionessentiallywasunenforce-ablebecauseofthecommissioners’lackofsupervisoryauthorityoverPerry’soffice.
“Knowing,forherandI,wasjustthemostunbear-ablethingintheworld,”ScottJordansaid. AbouttwoweeksafterShelby’sdiagnosis,herparentstoldherabouthercondition—andthattheywouldneedtospeakwithaneurosurgeontodiscusstheiroptions. “Ikindoffreakedoutandstartedcrying,”Shelbysaid. Aweeklater,theJordanfamilytraveledbacktoKansasCity.Forthem,sur-gerywastheonlyoption.
A cAthArtic chronicling Tocopewiththeideaofbrainsurgery,ShelbyspokewithherclosefriendandsocialstudiesteacheratCentralHeightsMiddleSchool,KelliBrown.BrownadvisedShelbytoexpressherfeelingsthroughwriting. “Whenshewasstrug-glingwithsomethingsbe-forehersurgery,Itoldherastoryaboutsomebodyinmyfamilyandthattheywereadvisedtokeepajournalandtowritethingsdown,”Brownsaid.“Some-timeswhenyouwritethingsdown,youreaditandyougo,‘Oh.’...It’skindofenlightening.” FollowingBrown’sadvice,Shelbyjotteddownherthoughtseachday.Someexcerpts,shesaid,aresadorangry,whileoth-ersarecomicalandjovial. “Itriedtomakeitalittlefunny,”Shelbysaid.“Inonepart,Isay,‘IknowI’veonlysaidthatIwanttocryaboutamilliontimes—maybeit’ssomethingaboutsurgerythatmakesmesoemotional.’” Shelbysaidthewritingprocess,whicheventuallyproducedmorethan26pagesoftext,helpedtoexpressherfeelingsasthedateofhersurgeryap-proached.
BAd things just ‘pArt of life’ OnthemorningofDec.6,2011,theJordanfam-ilytrekkedtoChildren’sMercyHospitalforShel-by’ssurgery.
“Iwaskindoffreakingout,”Shelbysaid.“Ihadneverhadsurgerybefore,sothenIjusthadtostartwithbrainsurgery,sothatwaskindofscary.” Theoperationtookmorethansixhours,leav-ingKimandScottJordananxiouslywaitingnearby.Theneurosurgeonsuc-cessfullyremovedShelby’sfirstvertebraeandapieceofherskullthroughafour-inchincisiononthebackofherneck. She’drecoverinthehos-
pitalforfivedaysbeforereturninghomeandwouldmissnearlyamonthofschool. Thetotalbillofthesurgerycostthefamily$95,000,KimJordansaid.Shesaidseveralcommu-nitymembersorganizedabenefiteventandraffleforthefamily,whichhelpedtoraiseabout$5,000. Followingthesurgery,Shelby’sspiritsremainedhighandherhealthim-proved.Shesaidsoonherheadachesandothersymp-
tomsdisappeared.Allthat
remainedwasafour-inchscaronherneckandtheyearningtoreturntoherclasses. “Itwaskillingme,”Shelbysaidofmissingherstudies. Eventually,Shelbyre-turnedtoherclassmates,whoknewofherconditionandsentplentyofget-wellcards. “Theywereverycon-cerned,”Brown,Shelby’ssocialstudiesteacher,said.“WhenwefoundoutthatShelbyhadhersurgeryandshewasfine...therewasabighooray.” Shelby’sdoctorsplacedseveralrestrictionsonheractivitiesanddiet,limit-ingherphysicalexerciseandrequiringshedrink
plentyoffluids.Shealsoisprohibitedfromeatinganyfoodscontainingmonoso-diumglutamate,acommonfoodadditive. Thefamilyplanstore-turntothehospitalApril25forafinalMRIthatwillshowifShelby’smalforma-tionhasdiminishedsincethesurgery. Untilthat’sconfirmed,Shelby’srestrictionsre-main. Despiteherlimitations,Shelbysaid,shedoesn’twanttobetreatedanydif-ferently. “Alotofpeoplemakeitabigdeal.‘Ohshehadbrainsurgery,shecan’tdothis.Ifeelsobadforher,’”shesaid.“ButIdon’tthinkit’sabigdeal.Ijustthinkit’spartoflifetohavebadthingshappentoyou,Iguess.” Shelbysaidsheplanstopublishherbook,“TheChiariChronicles:TheStoryofMyBrainSur-gery,”andnowisseekingapublisher.ShesaidBrownhasinspiredherfuturecareerambitions—shewantstobecomeaschoolteacher. Besidesearningascar,Shelbysaid,she’stakensomelifelessonsfromtheexperience. “Iknownowthatalotofthingscanbescary,”Shelbysaid.“Butitjustdependsonhowyoulookatit.”
resolution: Clerk says ‘retaliation’(Continued from Page 1)
Since Shari Perry is an elected official, commissioners have no supervisory authority over her. Therefore, a censure resolution was among their limited options for expressing displeasure with the clerk.
Photo by Matt Bristow/ The Ottawa Herald
12-year-old Shelby Jordan, left, is shown Monday with her parents, Kim and Scott, younger brother, Cooper, 4, and puppies, Bolt the Super Dog and Charlie Brown, at her home southeast of Ot-tawa. Shelby has been stay-ing at home, only attending school a few days a week, after having surgery for her chiari malformation.
shelBY: ‘I kind of freaked out and started crying,’ Central Heights student says(Continued from Page 1)
Normal Chiari I Malformation
Cerebellum Cerebellum
CSF Spaces
Spinal Cord Cyst in Spinal Cord
Herniated Cerebellum
Shelby’S condition: chiari malformation
Image courtesy of the Chiari Institute