Everyonceinawhile,youmeetpeoplethatnomatterwhattheodds,seemtodefylife’s hardships and challengeswith grace and compassion. Today Iwould like tointroduceafamily,thatdespitefacinginsurmountableodds,haveovercomemorein4years,thanmostdoinalifetime.

December 21 2011, as familygathered for the holidays,Hannah arrived home fromwork that evening with someincrediblenews forherpartnerShawn, they were going to behaving their first child. Despitebeing a surprise to both, theywereexcitedthatanewchapterwas to begin for them. Notknowing it at that time, this

chapterwouldprove tobeoneofmany inanevolving story thatbringsus to thepresenttime.Theholidayswerespentcelebratingthegoodnews,aseveryonewasexcited to think thatby that timenextyear,wewouldbecelebrating theholidayswithanewbaby.Unfortunatelythejourneytogettothatpointwouldprovetobedaunting,andwouldchallengeShawnandHannahbeyondtheirimagination.The first 4 months of the pregnancy went quite well, as Shawn and Hannahprepared like many first time parents do, with anticipation and a littleapprehension. Living in Vernon at the time, they looked forward to raising theirchildinasmalltownenvironmentthatfocusedoncommunityandlivinganactivelifestyle.Atthe20weekmark,duringanultrasounditwasdeterminedthesexofthebaby, itwasgoing tobeaboy!Theexcitingnewswassharedwith familyandfriends,anditwasshortlyafterthatShawnandHannahpickedthenameDominicfortheirsoontobelittleman.Theplanningwasinfullforce,aseveryonepreparedforthelasthalfofthepregnancy.During a routine visit with their doctor, it was determined that Hannah wasmeasuring slightly larger that she should have been, so as a precaution anultrasound was done just to make sure things were moving along ok. Later thatFriday, Shawn andHannah left town for aweekend getaway, as thiswouldmostlikelyhavebeenthelastchancetheyhadtogetoutoftowntogetherbeforeDominicarrived.Asnightbeganto fall,ShawnandHannahwereapproachingGrandForks,when their cell phones began to ring and beep as they entered an areawith cellphone service. Itwas this call that changed everything. TheDoctorwas calling totalkabouttheultrasoundresults,andwantedtoseethemfirstthinginthemorning.GettingacallfromyourdoctoronaFridayeveningcannevermeangoodthings,andthis proved to be the case. So, a very anxious and scared Shawn and Hannahimmediatelyturnedaroundandmadethelongdrivehomeinthedarktogetreadytomeettheirdoctorinthemorning.Withverylittlesleep,ShawnandHannahalongwithHannah’smomanddadMichelleandJeff,metwiththeirdoctortodiscussthefindingsoftheultrasound.ItwasdeterminedthatDominicwasquicklydevelopinga

conditioncalledHydrops,inwhichhisbodybeginstoretainfluidinmultipleareas.Thishasmanycauses,whichcanrangefromminortoextremelydangerous,butforthat to be determined, theywould need tomeetwith specialists in BC Children’sHospital. So with little warning, the doctors instructed Shawn and Hannah toimmediatelyheadtoVancouver,whereateamwasawaitingtheirarrival.Unawareofwhatwas to follow, ShawnandHannahpackedabackpackwith some clothingandbeganthedrive toVancouver tobeginwhatwastobea longseriesof testinganddiscussionsaroundDominic’shealth.ArrivingatBCChildren’saround7pm, itwasn’t until close tomidnight before Shawn and Hannahwere introduced to Dr.Tessier, a doctorwithMaternal FetalMedicine. That evening, she performed a 2-hourultrasound, tobegin the investigationphase and try todeterminewhat theyweredealingwith.This would be the first of many tests over the following weeks, up to and afterDominic’sbirth.Withtherebeingover200differentcausesoftheHydropsthatwasidentified,itwouldn’tbeaneasyprocesstoformallyidentifyanddiagnoseaspecificcondition.Fortunately,Hannah’smomMichellelivedinRichmond,andwasabletoprovideaplace forShawnandHannah to stay.Unfortunately,with theamountoftestingrequiredandconcernforHannah’shealth,theywerenotabletoreturnhometoVernon.Rightfromthestartthedoctorswereveryconcerned,andwerehesitantaboutrecommendingcarryingforwardwiththepregnancy.TheymadeitveryclearthatDominicwouldbeluckytosurvivebirth,andifhediditwouldmostdefinitelyentail a very short life of disability and significant challenges. ShawnandHannahwerepresentedwithoptions,butdeepdowntheybothknewthatDominicdeservedachanceatlife,andtheywouldbewillingtomakewhateversacrificeneededtogivehimthe lifehedeserved.So theweekscontinuedon, testingcontinuedtoruleoutconditionsanddisordersonebyone,butnodiagnosiswouldcome.Shawn happened to be off work during this period due to a work injury a fewmonths prior, however was required to do physiotherapy in Vernon and had tobeginamodifieddutyreturntoworkprogramwithWCB.Soacoupleweeksafterarriving in Vancouver, Shawn had to return home during the weekdays to beginphysio and return towork.Obviously thiswas extremelydifficult for both ShawnandHannah,beingaway fromeachotherduring this extremely stressful timeputsignificantpressureonanalreadytoughsituation.Astheweekswentby,andtestingcontinuedtobringnoresultsitwasbecomingmoreandmoreclearthattheyweredealingwithsomethingalittlemoreserioustheninitiallythought.DuringShawn’sphysio itwasdetermined that hewould require surgery to correct damage inhiswristsustainedfromtheaccidentafewmonthsprior.Itwasrightaroundthistimethat the doctors also determined that based on Dominic’s status at that time, hewouldneedtobedeliveredearly,at34weeks.AsJulyapproached,Shawnwasagainoff work and back in Vancouver with Hannah, as they prepared for July 19th,Dominic’sarrival.

Thedayofthe19thwascertainlyanervousoneforShawnandHannah,andtherestofthefamilyaswell.SincetheystillhadnoanswersonwhatDominicwasdealingwith, and the doctors were cautiously optimistic about him surviving birth, timeseemed to stop that afternoon. As family anxiously waited in the waiting room,Shawn and Hannah along with a large team of doctors, prepared for Dominic’sarrival not knowing what to expect. At 2:58pm, Dominic David Ellis made hisanticipatedarrival intotheworld,andbeforeShawnandHannahcouldgetagoodchancetoappreciatethemoment,DominicwasimmediatelytakenofftotheNICU,to begin his journey. Dominic’s first 24 hours were difficult and critical to hissurvival, andwhileHannahwasbeing cared forpost-surgery, ShawnwasbedsidewithDominicforhisfirsthours.

Weighinginat3105grams,Dominicwasaheavy-weightamongstother“preemies”intheNICU. Itwasclearat thispoint thatDominicwouldhavea longroadahead,justtobeabletogohomehewouldhavetoovercomesomuch.Thefollowingdayswere spent with Shawn and Hannah by Dominic’s side from 7am to 11pm, andfamilymemberscametovisitthemintheNICU.Dominicwasattachedtoaplethoraofcablesandsensorsalongwithvariousformsofbreathingandfeedingsupport.Hewasunabletofullybreathonhisown,andhadtobetube-fedashewasnotreadytoattemptbreast-feedingyet,thiswouldhavetowait.DuringthesecriticaldayswithDominichangingonintheNICU,furthertestinghadbeendone,andeventuallynewinformationwasdiscovered.OneoftheleaddoctorsfortheNICUteamapproachedShawnandHannahtosharethesadnews,theybelievedDominicwassufferingfromararemetabolicdisorder,howeverthetestingwouldneedtobeduplicated intheUnitedStates,requiringalongwaitforananswer.Untiltheresultswerevalidated,Shawn and Hannah had to carry onwith Dominic’s care at the forefront of theirminds.DaysafterDominicwasborn,ShawnwassentbackhometoVernontohave

hiswristsurgery.Againstdoctor’sorders,Shawnleft2dayslateranddrovebacktoVancouver tobewithhis family.Afterweeks in theNICU,Dominicbegan toshowsomesignsof fight.Hewasopeninghiseyesand lookingaround,gettingsnugglesfromMomandDad,andeventuallystartedbottleandbreast-feeding.Thiswasthecrucialsteptobeingsenthome.OnceDominicwasabletobreast-feed,orbottle-feedhisrequirementsthentheyfeltcomfortableallowinghimtogobackhome.AweekorsointoAugust,thedoctorsgaveShawnandHannahthegoodnewsthattheywerereleasingDominic,andwouldtransferhimhometoVernonwherehewouldspendmoretimeinthehospitalbeforefinallygoinghomewithMomandDad.So after months of being stuck in Vancouver, never really knowing what washappeningnext, ShawnandHannah finally got to gohome, butmore importantlywith their son Dominic. BC Children’s flew Dominic to Vernon, while Shawn andHannah had to make the drive back, eager to meet Dominic at the hospital inVernon.ThefollowingweekswerespentinthepediatricwardinVernon’sHospital,workingonhis feeding.Dominiccouldnotbereleaseduntilhecoulddemonstratetheabilitytofeedforatleast24hourswithouttubefeeding,sototallydependentoneither bottle or breast-feeding. About 10 days later, Dominic was feeding on hisown,andeventhoughsomedevelopmentdelayswerealreadybeginningtoshow,itseemedasifDominicwouldbesenthomewithhisfamily.

Forthefollowingcouplemonths,Shawn,HannahandDominicspenttimeasafamilyintheirlittleVernontownhome.Infantdevelopmentspecialistswouldcomebythehome to provide guidance and do assessments on Dominic’s development, andmonitorhisprogress.Whileitseemedlikethingsmightactuallybeok,andDominicmightnotbefacingasseriousofasituationastheywerebeingledtobelieve,thingstookaverysuddenchangewhentheyreceivedaphonecallfromtheBioChemicalDiseasesteamatBCChildren’shospital.Dr.Salvarinova,whohadbeenassignedtoDominic,calledtoletthemknowthattheywerealmost100%certaintheyidentifiedDominic’scondition,butwouldrequirespecialgenetictestingonbloodworkfrom

bothShawnandHannahtoconfirm.Afterevenmoretesting,ameetingwassetforOctober2012,inVancouvertomeetwithDr.Salvarinovaandherteamtoreviewtheresults.Atthispoint,themajorityofconditions/disordershadbeeneliminated,andthe remaining fewwere all on the bad to severe side of the scale. So Shawn andHannahknewthatthenewstheywouldreceivewouldn’tbefavorable,infactitwasamatterofhowbad thebadnewswouldbe.During thatmeetingonOctober,Dr.SalvarinovapresentedShawnandHannahwiththefindingsonthetesting.Dominichad been diagnosed with an extremely raremetabolic disorder, which hasmanylevelsofseverity.UnfortunatelyDominicwasontheabsoluteworstsideofthescale,a Lysosomal Storage Disorder within the Metabolic disorders category. Theprognosiswaspoor,astheconditioncomeswithanaveragelifespanof13months,withonlyabout35documentedcasesinhistory,DominicbeingonlythesecondinCanadaever.Lookingaheadat13monthswasnotsomethingtheywereoptimisticabout,given theoutcome.AshockedandbrokenheartedShawnandHannahwerelefttoconsider“Whatnext?”Theanswer to “What’snext,”wouldnotcome immediately,as it took time for theinformationtofullyabsorbandbecomeareality.Theanswerwouldhowevercomemonths later, during some additional testing. Shawn, Hannah, and Dominic spenttheirfirstfamilyholidaystogetherathomeinVernon.Uptothispoint,Dominicwashealthy, but clearly not developing like “normal” babieswould, as even the basicfunctions likeholdinguphisheadorreachingfortoyswerenothappening. ItwasclearDominicwould be requiring ongoing support from InfantDevelopment, andShawnandHannahwerepreparedtoinvestwhatevertimeandmoneytomakethishappen.

April2013broughtthembacktoVancouverforsomeadditionaltesting,specificallyfocusingonhis eating/swallowing.A routine feeding studywasperformed just toensureDominicwasswallowingokandtherewerenoissues.Unfortunatelyagain,nothingprovedtoberoutineasthetestingveryquicklywasstoppedduetoDominicaspirating terribly. Over half of what Dominic was swallowing wasn’t actuallymaking its way to his stomach; it was going into his lungs, which is obviouslydangerous. This clearlymeant one thing, Dominicwould need to be tube fed fulltime.

ThiswasverytoughforbothShawnandHannahtoaccept,astheywouldnolongerbe able to bond with him during feeding. It would all be handled by a bag andmachinemoving forward,whichwas a difficult image to come to termswith, butultimately Shawn and Hannah were equally committed to making sure Dominicreceivedthebestcare.Soitthismeantthatthiswouldhavetobetheirnewrealitythen thatwasgoing tobeok. This recent changealsomadeone thingvery clear,DominicneededtobeinVancouvertogetthebestcare,asVernondoesn’thaveanypediatricspecialiststhattheywouldhaveneeded.So,itwasdecidedthatShawnandHannah would have to move to Vancouver, and Michelle graciously opened herdoorstoShawn,Hannah,andDominictohaveaplacetostay. ShawnleftbackforVernon,andoveraweekhepackedupalltheirpossessions,put90%ofwhattheyowned into storage, and brought out their beds and clothes and a few personalitemstotryandgetsettledintheirnew“home”.By the end of April, everyone was settled, and it was time for everyone to startbuildinganewroutine.LearningtonavigatethedayswithDominic’sveryspecificfeeding schedule took some time to adjust, but it wasn’t long before Shawn andHannahwerecomfortablewiththenewchanges.Atthistime,bothofthemwereoffwork,Hannah’sMaternity leavewasexpired,Shawn’sWCBcasewasclosed,sohehad to findwork immediately tohelp supporthis little family. FortunatelyShawnlandedaparttimejobwithShawinthecustomerservicecallcentre,andwhilenothis ideal job it did get him generating income right away. Not too long after itseemedeverythinghadsettledin,Dominicbecameverysickwithpneumonia.Thisresultedina2-weekadmissiontoBCChildren’s.Unfortunately,thiswasthefirstof6back-to-backboutswithpneumoniaforDominic,whichresultedinmanyweeksinthe hospital with mom and dad by his side. Shawnmissed significant time fromwork,whichcameatahighcost,asallhistimeoffwithunpaidashewasonlyaparttimeassociate.Afterthesemultipleadmissions,ShawnandHannahapproachedthedoctorstoaskwhyhewasgettingpneumoniasooften,especiallysincehewastubefedwhichwassupposedtoeliminatethisfromhappening.ThefeedingtubeDominicwas usingwas called anNG,meaning the tube goes down the nose and into thisstomach.ForwhateverreasonDominicwasrefluxinghismilkup,whichthenwentdownintohislungs.Soafteralongconversationonotheroptions,theysettledtotry

anewtubecalledanNJ,whichrunsfurtherpastthestomachintotheintestine.Thiswould100%stopanyrefluxastherewouldbenowhereforthefoodtogo.Thisideaendedupbeingacorrectone,becauseDominicimmediatelyrespondedbettertothenewtube,andwasnotgettingsickagain.Afterthis,thingsseemedtostabilizeforDominicintermsonhishealth.Bynowhehadalreadycelebrated2birthdays,whichwasfarbeyondwhatanyonewouldhaveexpected. But like in the past, stable periods always led theway to very unstableperiods.When2015rolledaround,noonecouldhavepossiblyanticipatedtheyearthatwastocome.TheNewYearcameby,withhopesofahealthyandhappyyear,butbyFebruary itwas clear thatwouldnotbe the case.At the start of February,Dominicbecameverysick,veryquickly.Afteradayofanextremelyhighfever,andescalating concerns with his breathing, Shawn and Hannah immediately broughtDominic to the Hospital. Along the drive, Dominic stopped breathing for a fewmoments,andtherealitysetitthatthiswasserious.Uponarrivingtotheemergencyroom, they were immediately rushed into a trauma room, where a team ofdoctors/nurses/respiratory therapists/pharmacists/ and other support staffswarmedDominicwhileastunnedShawnandHannahstoodbyincompleteshock.Not to longafter theywere introduced toDr.Pittfield, theDoctor inchargeof theICU.HeimmediatelyidentifiedDominic’sbreathingasbeingatriskandputhimonaspecialbreathingmachinecalledaBi-Pap,whichdoestheinflatinganddeflatingofthelungswithcontrolledpressureviaamask,asDominicwastooweaktodothisonhisownnow.Thenbeganalong2weekadmissioninICU,asDominicheldonforhislittlelifewiththehelpofamachine,andlovingparentswhoneverlefthisside.Sleeping on the floor beside Dominic, Shawn and Hannah refused to leave himduring his time in ICU. Shawn continued tomiss significant time fromwork, buttherewasnootherplacehecouldbebutwithhisson.Eventuallyjustover2weekslater,Dominichadrecovered fromwhatwasanotherboutofpneumonia,andwasabletobreatheonhisownwellenoughthattheyweresenthome.

Obviously grateful to make it out of such a scary situation, Shawn and HannahcontinuedtodoeverythingtheycouldtokeepDominichealthyandhappyathome,butonceagainthingschangedveryquickly.BarelyamonthafterbeinghomefromtheICU,Dominicbecameverysickagainwiththesamesymptoms,andonceagaintheywererushedbacktothehospital.LikeabaddreamorcaseofDéjàvu,DominicwasadmittedbacktotheICUforanotherlongrun.ShawnandHannahwerethere24hourswithhimagain,justtryingtobeascomfortingtohimastheycould.

DuringthissecondICUstayDominiccamesecondstopassingawayononespecificoccasion, which required some intervention to get him breathing again. It wasstarting to look like thiswouldbe anongoing challenge for themall, as the sameproblemswere repeating themselvesquickly andoften.After another15-16days,Dominic was release again, however they were sent to Canuck Place for sometransition care, as Dominic was still not 100%, but off breathing support, onlyneedingoxygen.SothefamilyspentabeautifulEasterwiththestaffandvolunteersatCanuckPlaceandhadaspecialtimewithDominic.

Back home again, Shawn andHannah at this pointwere justwaiting for the nextcurveballtobethrowntheirway,andonceagaintheywouldnothavetowaitthatlong.Aprilcame,andwithitsodidanothervisittotheICUforDominic.Itwasclearhis little body was just not strong enough to fight anything on his own, and hisbreathing suffered significantly because of this. Another 15-16 days in ICU, withanotherclosecallonthedaybeforetheywerereleasedagain,ledtoanothervisittoCanuckPlaceforadditionalcare.ItwasstartingtolooklikeDominicmightnotmakehis3rdbirthday,eventhoughtheyweregettingclose.3ICUvisitsin3monthsreallytook a lot out ofDominic, but also Shawn andHannah. Financially/Emotionally itdrainedthem.Everyday intheICUcostsabout$100for thetwoof themtocoverparking, and food. Those 3months ran a total of around 45 days, sowith Shawnbeing off work again, it really put a significant strain on them just to stay abovewater. Fortunately living with Michelle saved them in their living expenses, andMichellewasalwayswilingtohelpfinanciallywhenshecould.

Thesummermonthsbroughtsomemuchneededpeaceandstabilityfortheirlittlefamily. Shawn eventually went off work on EI, to focus on family, with his workpromisinghis jobbackwhenhewasready. WithDominicgrowing,andhisneedsbecomingincreasinglydifficult, itwasclearthatthecurrentlivingconditionswerenotsuitable,asMichellewaslivingina2storyunit,with2additionalsetsofstairstogetup.SinceDominiciscompletelydisabledandcannotsupporthimself,carryinga3yearoldupsomanystairswasproving tobedifficultanddangerous.SoShawnandHannahsearchedaround,andwereabletofindagroundlevelapartmentonlyblocks away from Michelle’s. The cost would be a factor as they were on singleincome, with some government support for Dominic’s disabilities, but they wereable to make it work by making sacrifices, something Shawn and Hannah hadbecomequiteaccustomedto.SoShawnwasable todriveout toVernonandbringeverythingtheyhadbeenpayingtokeepinstorageovertheyears,andonceagainhavetheirownspacewiththeirownpossessions.Fall started to roll around, and comeOctober it looked like the cyclewas startingonceagain.Dominicfellveryillagain,andthe3ofthemspendanother2weeksinICUoverThanksgiving.But, likeeveryother timebefore,Dominic fought through,with mom and dad by his side, never giving up hope. With Shawn’s EI endingshortly, he approached his work and was able to be reinstated for the end ofDecember.Everyonewashopingthatthingswouldlevelout,andgobacktoaniceregular routing. But once again, only a fewweeks later,Dominic became ill againwhichbroughteveryonebacktothehospitalforyetanotherstay.Afteranotherlonghaul,Dominic continued to fightonandeveryonegot togobackhomebefore theend of themonth. After getting Dominic home, it was clear hewas not the sameperson.Theyearsofrepeatedfightswithpneumonia(10-11confirmed)hadtakenasignificant toll on his body, and it was clear he was not recovering back to hisprevious self. Now requiring 24-hour oxygen, things changed drastically again.Taking Dominic out in the past was hard enough just with feeding tubes andmachines, but nowwith oxygenbeing required, it really showedhowhard thingsweregoingtobemovingforwardagain.Over the last 4 years, Shawn andHannah have dedicated 100% of themselves tocaring for Dominic. Their common mission along the way has always been toprovideDominicwith thebest life hedeserves. Comfort, Love, Laugher, these arethe foundations of their approach, and the doctors certainly think this is what’sallowed Dominic to be here as long as he has. No other child with Dominic’sconditionhaslivedtoDominic’scurrentageof3years8months,andwithJulyfastapproaching, Shawn and Hannah are thrilled to think they will be hopefullycelebrating a 4th birthday with their very special son. If you think of the wordsacrifice,ShawnandHannahcertainlypersonifythemeaningoftheword.These4years have meant that everything else in their lives have been placed on hold.Careers/vacations/date nights/friends/etc… have all been placed on the back-burner,sotheycanfocustheirattentionsolelyonDominic.Realizingwhataspecialgiftthemomentholds,theyhavedonetheirbesttosimplyliveinthemomentandbe grateful for the support they have received along the way from so many

wonderfulpeople.WhilenooneknowshowmuchlongerDominichas,theonethingweknowforcertainishewillcontinuetobelovedbysomany,andsolongasheishere,ShawnandHannahwillalwaysputhimaheadofeverythingelse.AsDominiccontinues to grow, so will his needs. Shawn and Hannah have had to constantlyadjusttoanew“normal”everytimeDominic’sconditionchanges,andnothinghasbeen harder for them than watching his health slowly decline as his conditionprogresses.Therewillneverbeacure,oranytypeoftrialsormedicationtomakethingsbetterforDominic,itssimplyamatteroftimebeforetheconditioneventuallytakeshimaway, but until thenboth ShawnandHannah refuse to stop fighting togivehimthemostcomfortableandlovinglifehecouldeverknow.Thisproveshowcompletelyselflessthetwoofthemare,andpeoplelikethemtrulydeservenothingbutloveandsupportastheynavigatetheroughtidesofspecialneedparenting.