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What Matters Most to KAND Families?
- 1. Patient Perspectives Activity 2019 KAND Conference
- 2. At the 2019 KAND Family & Scientific Engagement Conference in New York City, we asked families affected by KIF1A Associated Neurological Disorder (KAND) to help people understand their challenges and what matters most to them. Here are their responses. www.kif1a.org/2019conference/
- 3. The most challenging aspect of living with KAND is "progressive"idea& therelatedunknowns notseeingwell livinginan inaccessibleworld physicaltollonfamily fromlifting educatingour doctors worriedtherewon't betherapyorit's toolateformyson uncertainty/unknown unknownfuture, nocure uncertainty notenoughhoursin day(4kids,full-timejob, specialneedschild).Never completeanything! notgettingtosee mychildexperience normalactivities& milestones notknowingwhat thefutureholdsfor myson theunknown:what’s myboy'slifegoingto be?Howlongdowe have? "Yourchild looksfine"fromthe outside peoplesaying "theywillgrowout ofit" notknowingthe future howtimeconsuming everythingis,leaving littletimewithother family/kids/husband constant supervisionofchild,frustrationwithchild unabletodothings otherscan do&worry aboutkeepingsafe fearoftheunknown seizures cleaningpoopoffcarpetafteroursonself-removesnappy (diaper) battlingwith yourselftomakethe rightchoicesforyour child lackofcommunityresources notbeingableto doeverydaythings aseasily
- 4. The most challenging aspect of living with KAND is thefutureis unknown thetimededicated everydaytomakeit normal fearoftheunknown alloftheunknowns knowingwhatis normalvs.isthisa seizure?IsthisKIF1A? uncertainty comparingyour childtoothers worryingaboutthe future uncertainty that our son isvery aware & depressed,angry. It would be betterif he didn't know. theunknowns notknowingwhat's ahead seeingmygirl suffer/in respiratorydistress beingscaredofthefuture who'sgoingtotake careofhim,whenI won'tbethereanymore sleepproblems numerous hospitalizationsayear=lifeonstandby involvingthechild withsiblings&other childrenwithoutKIF1A ineverydaylife havingtotakecare ofaneternalbaby beingisolatedand scaredofvirusesall thetime theidea/scareof death communication degenerative disease;poorbalance -falling; communication&speechproblems;vision problems theunknown
- 5. The most challenging aspect of living with KAND is notknowingthe future worryingaboutmychildasshegoesthroughlife.Howwillsheadjust? fearofwhatisto come theunknownabout thefuture theuncertaintyofthefuture injuries theunknown keepingmydaughter safe fearofthefuture theuncertaintyof whattomorrowwill looklike beingindependent seeingthekidsandrealizingthatyoumaynotbeabletomakeadifference uncertainty itisa degenerative condition thefear can'tcureit(YET!) notknowingwhat's gonnahappennext uncertainty uncertainty tobeoutside normalhuman families/society experience nevergettingto seeafirstsmileor hearafirstlaugh (un)consciousnessformeasamother knowinghislifeis expectedtobe shortened theunknown theunknownfuture
- 6. I want researchers & doctors to know whatthefutureholds formydaughter mykid'sname& family moretherapeuticoptions&solitions wewillnotgiveup& mydaughter isworthit thisconditionaffects manymorepeople thanweknow telluswhatwecando,wewillMOVEMOUNTAINS tomakeithappen. Seriously...ANYTHING. Iamnotanidiot. Mychildhasacondition thatcauses… disabledpeopleare worthyoftime, attentionandtreatment mysonisnotjust anumber.He'sa person. wearegrateful ourkidsare worthit whathasworkedor notworkedfor otherKIF1Akids …abouteveryaspect ofmykid'scondition,not justthoserelatingto his/herspecialty theymustbe aggressiveinorderto winthisracewithKIF1A Iamnotcrazy…my childhasreal problems! my child is aperson too… She hasfeelings and can hearwhat you are saying hisimpairmentmay seemmildbutitonly affectsthemmildly,not him MORE acureforKIF1A mychildwithout havingtoexplainhis abilitieseverytime I'mtiredofthe factyouhavelimited knowledgeofKIF1A. I'mdiscouragedthatyoudon'tput asmuchintoitaswedo. I want them to know I'm capable STOPusinga diagnosislikeCPwhenyou don'tknowwhat'swrong. JustsayIdon'tknow! abouttheresearch intoKIF1AandIwant youtobeinvolved
- 7. I want researchers & doctors to know theimportanceof continuityofcare withallspecialists willsurgical interventiondomore harmthangood? howtoslowtheprogressivenessof disease howtocontrol seizures howtoimprove visionoratleast haltdeterioration it'sokaytosay "Idon'tknow" preventaspiration howtomake progressmatter heisblindnot deaf(don'tscream athim) aboutKIF1Aand rarediseases weknowourkids &morethanthedoctors doabouttheircondition atthisstage whattodo,whatshouldbechecked heissosweet& notjustaverysickperson, heisa"normal"child thattreatmentisrelativelysoon!! wewilldowhatever wecantomovethe research/care/treatment processalong howtocuremy child Ifeellikenothing works somanytherapies….Littleprogress I'mfrustratedby theirlackofknowledge &unwillingnessto researchthecondition Iwantthemtotake itmoreseriously everythingthat thereistoknow&to researchitthemselves. Don'tdependonus. moresotheycandiagnosismorekidsandfindatreatment Iwantthemtodo something thatwearescared& wanttostopthisdisease fromprogressing
- 8. If treatment can help anything mychildtellushowhe feels&whathewants mychild'shappiness...butbeingabletoliveasafullemotionalbeing herfriendships ustofindacure beforeit'stoolate meaningful difference in our daily lives. , that would make a mysonaccomplish hislifegoals hisqualityoflife acure ensurethingswill beokwhenI'mgone mychildliveonherownwithadequatesupportstolivearichlifeonherterms mydaughterbehappy&loved mychildknowsheis loved&acceptedasshe is mydaughterlivea full&happylife mychildbehappy, safe&haveapurpose tohislife mychildlive safelybut independently mychildbehappy &healthy mychildbehappy, abletolearn¬ inpain makingEVERY moment count mysonhaveahappy life mychildtonotbein pain mychildtooutlive me helphimachieve everythinghewants& iscapable&interestedinmychild'squality oflife haveagood relationshipwithhis siblings mysonlivea normallife
- 9. If treatment can help mychildhavea chancetolive independently mychildtoenjoy hislife mychildbehealthy &happy mychildcontinue toimprove& progress himfeelgoodabout himself meaningful difference in our daily lives. , that would make a mychildhavea chancetoliveafulfilled&happylife mychildbesafe &happy mychildmakea friend mysonbeableto lookmeintheeyes mychildplaywith otherkids strengthenour daughter'slegs& increaseherbalance mydaughterfall less&beabletokeep upwithherbro&sis himtotellusif heisinpain mychildkeepup withotherchildren& stopfalling thediseasefrom progressing cognitive impairment her talking/communication mychildtellmehe'shungryorif he'sunwell maintaining mobility&improving memoryfunction hernotget pneumoniaevery timeshegetsacold mychildwalk& communicatebetter hisvision mychild communicatewhat hurts controlmychild's seizures
- 10. What matters most to me is havingmychild walkindependently& overcomecognitive delays mychildhavingthe coordinationtodo day-to-daytasks havingmychildnotgettootiredtogetintothetub(leg weakness) stoppingthe progression stoppingthings gettinganyworse mychildbeingable toseebetter mychildfalling downless havingmysonrun withoutwalking aides mydaughter followingher interests&passions formydaughtertomakefasterprogress educatingothers aboutKIF1A stoppingKIF1Aprogression improvingspatial awareness& balance/coordination stoppingthe progression decreasingseizures &repetitivebehaviors; improvingbalance preventingmychildfromfalling havingmychild communicateatall stoppingmychild fromhavingtoworry abouthissafety mychild'sability towalk mychildbeingable towalk communicationwith myson mychildhavinga futurebeyondKIF1A limits.Mychildhasafull life. knowinghowwill shebewhenIcan't helpanymore mychildnotbeing inpainfamily
- 11. What matters most to me is mychildbeing includedinthe community thathefeels comfortable thatheissafe thatothersseehow amazingheis¬ forhisdisability knowingthatmy kidswillbecaredfor mychildcan somewhatgrowupnormal&happyandloving heissafe, comfortable,happy havingacureto stoptheprogression ofthedisease&achance toheal mychild'squality oflife herhappiness Mychildhavinga functionalfuture& happiness mychild's happiness mychildishappy, smilingallthetime mychildisas happy&healthyas possible toalwayshavegoodpeoplearound&liveanormal/regularlifesimilartohispeers formychildto knowheisloved! mychildbeing independent mydaughter's happiness daughter'sability toenjoylife he'sveryloved&happy mychildtolive thebestlifeshe possiblycan thatheishappy, content&pain-free mychildisn't suffering mychildfeels loved hercomfort;no suffering(no medicalaggression) forhimtobe healthy&havea happylife thatmychildwill betakencareoforcan takecareofherselfif/when Icannolongerdoso that herfutureisnotrunbyKIF1A
- 12. JOIN OUR MISSION TO CURE KAND AT KIF1A.ORG