Indaba ka-Zoe yokuphila ne-Cystic Fibrosis

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Hlangana no-Zoe

U-Zoe Ose uyintombazane encane ekhangayo enomomothekayo othakazelisayo futhi amehlo amakhulu, amahle aphethwe ngoshiseko, injabulo, nokungabi namacala kwengane esanda kuqala ukuthola isimangaliso sezwe elizungezile. U-Zoe uyintombazane encane ehlala ne- cystic fibrosis (CF) , isifo esicindezela ubuntwana obungenandaba nokukhathazeka futhi esongela ukumbamba impilo eyithandayo kakhulu.

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Indaba ka-Zoe

Abazali bakaZoe, uScott noJada Ose, baqala ukusola ukuthi kukhona okungahambi kahle noZoe lapho engakabuyisanga nesisindo sakhe sokuzalwa emasontweni amabili okuqala okuphila. U-Zoe wagcina esifinyelele isisindo sakhe sokuzalwa lapho eseneminyaka engaba ngu-2 ubudala, kodwa uScott noJada bayazi ukuthi kukhona okwakungalungile kakhulu. Njalo lapho iZoe idla, isisu sakhe sasizoba nzima futhi sigwetshwe, futhi wayezokhamuluka ebuhlungu kuze kube yilokho okwakunjengokuthi konke ayekudlile kwakuzobuyela emuva ku-diaper yakhe.

Phakathi nezinyanga eziyishumi zokuqala zokuphila zikaZoe, uScott noJada bavakashela ezikhathini eziningi ehhovisi lezingane ukuze baxoxisane ngokukhathazeka kwabo. Lapho udokotela wezingane engenayo impendulo yezimpawu zikaZoe, uScott noJada bazenzela ucwaningo futhi baqala ukusola ukuthi iZoe ingaba ne-cystic fibrosis. Udokotela wezingane abazange baphendule ngokukhathazeka kwabo, ngakho uScott noJada bathatha iZoe esibhedlela sezingane ngombono wesibili. Ngenkathi bekhona, ngosuku olwandulela u-Zoe waphendukela ku-1, izinsolo zabo ziqinisekisiwe. U-Zoe ngempela wayene-cystic fibrosis.

U-Zoe waqala ukuthola ukwelashwa ku-CF Care Centre eqinisekisiwe. Manje, eneminyaka engu-4 ubudala, uye wakhula waba yi-80c percentile emangalisayo kumashadi okukhula. Ukuphila akulula, futhi usazobhekana nezinkinga ngezikhathi ezithile, kodwa ngokusebenza kanzima, i-Zoe ikhula futhi ihamba kahle.

Ngemuva kokutholakala kweZoe, ezinye izingane eziyisikhombisa zahlolwa. Abantwana ababili, abangabantwana bakaJada nabazali bakaScot, nabo bane-cystic fibrosis. Zinezinguquko ezincane kakhulu kuneZoe, futhi ngenhlanhla, zinezimpawu ezincane kuphela zesifo .

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Izikhathi Zokudla Zoe

Lapho eqala ukutholakala ukuthi, u-Zoe wayene-tube yokudla emakhaleni akhe asetshenziselwa ukondla ifomula eliphezulu eliphezulu ngaphakathi esiswini sakhe futhi amsize akhule ngokushesha. UScott noJada bakhumbula ukuthi babevame ukulala ezinyangeni ezintathu uSoe ayephethe ngayo i-tubes feedings - ukwesaba ukuthi leli bhubhu lingaphuma noma liboshwe ngeZoe njengoba elele. Bahlala eduze naye ubusuku bonke ukuze baqiniseke ukuthi iZoe yazuza zonke izinhlawulo eziyigugu zomsoco ayezidinga.

Manje i-Zoe idla ukudla okuvamile kwetafula kodwa kufanele idle inqwaba yekhalori eliphezulu, ukudla okunamafutha aphezulu. UScott noJada bathi lokhu kungaba nzima ukufeza uma kusetshenzwa nesidlo esineminyaka engu-4 ubudala. Njengabantu abaningi abane-cystic fibrosis, i-Zoe nayo ithatha ama-enzyme noma nini lapho idla.

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Usuku Oluyingqayizivele lweZoe Nomndeni Wakhe

U-Zoe uthatha ama- bronchodilator neminye imithi eqondiswe kulabo abane-CF. U-Zoe noJada kumele bazinikeze isikhathi sokuthatha imithi ephazamisekile kanye nokwelashwa kwemvume yezindiza izikhathi eziningana ngosuku ngalunye. Ngesinye isikhathi i-Zoe isebenzisa i-vest compression vest ye-airway imvume, futhi ngezinye izikhathi uScott noma uJada benza i- physiotherapy ye-chest manual. Lapho uJada enganikeli ngezokwelapha ku-Zoe, umatasa ukhathalela abafowabo nodadewabo kaZoe futhi nabo basekhaya.

UScott uchitha isikhathi esiningi emgwaqweni, njengoba ehamba ngezinyawo ngamakhilomitha angama-150 ukuze asebenze usuku ngalunye futhi amakhilomitha angu-150 aphinde abuyele ekhaya ukuze abe no-Zoe, uJada kanye nomndeni wonke we-Ose kusihlwa. UScott kufanele enze lo mzila ngoba umqashi wakhe (e-Savannah) unikeza umshuwalense wezempilo kaZoe. Umndeni kumele uhlale eJackville, noma kunjalo, ukuba ube eduze nesikhungo seCF, lapho iZoe kumele ihambe khona ekunakekelweni kwezokwelapha.

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Iseluleko sikaScott noJada

Ngokuzihlangenwe nakho kwabo kanye nokubona okuhlangenwe nakho kwabanye, uScott noJada baye bafunda okuningi ngokukhulisa ingane nge cystic fibrosis. Banikeza amagama alandelayo okuhlakanipha kwabanye abazali esimweni sabo:

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Yiba nesibindi ekulandeleni uhlelo lokuPhatha

UScott uthi, "Into ebaluleke kakhulu noma yimuphi umzali angayenza ukuqondiswa ngokwanele ukuba aqhubeke nomgomo othile wansuku zonke. Lokhu kuyadingeka! Ingane ene CF kumele ihlale inempilo ngangokunokwenzeka. Ngalokhu, ngisho konke abakudingayo: ama-enzyme, imithi yabo, ukuphefumula kwabo kanye nesifuba sabo se-poet physiotherapy (CPT). "

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Qopha konke, nsuku zonke

Thola i-notebook noma enye uhlelo ukugcina amarekhodi nsuku zonke yezenzakalo ezibalulekile. UScott noJada babhala isikhathi, isibalo kanye negama lazo zonke imithi kanye nokwelashwa kwemvume yokuhamba emoyeni uZoe ethatha usuku ngalunye. Baphinde babhale ukudla okudlayo, ama-enzyme ayinikezwayo kanye nemininingwane yobukhulu, umbala, ukuvumelana nokuvama kwezihlalo zakhe. Bhalisa noma yiziphi izimpawu ezingekho ezijwayelekile ze-Zoe, futhi ziletha nabo lonke lolu lwazi uma zibona ithimba le-CF. UScott noJada bathi la marekhodi anikezela ukuqonda okubalulekile ukusiza ukukhomba imbangela yezinkinga uma bevuka.

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Khumbula Ukuzinakekela Njengengane Yakho

Kumele uhlale unamandla okwanele ukubhekana nokucindezeleka ngokomzimba, kwengqondo nokwezimali kokunakekela ingane egulayo. Kumele futhi uhlale uqinile ngokwanele ukuhlangabezana nezidingo zezingane zakho eziphilile.

UScott noJada banomndeni omkhulu, ngakho-ke kuye kwadingeka bathole ubuciko, bathole izindlela zokulinganisela isikhathi sabo phakathi kwezidingo zikaZoe nezidingo zabanye abantwana. Beluleka abazali ukuba bahlanganyele neqembu lokusekela noma inethiwekhi nabanye abazali bezingane abane-CF.

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Ungesabi Ukubuza Abahlinzeki Bempilo Yakho

UScott noJada bagcizelela ukuthi, kuyilapho kuhle ukuthembela odokotela bakho nabahlengikazi, kubalulekile ukukhumbula ukuthi bangalungile noma benze amaphutha. Gcina iso eliqaphile, futhi uma kukhona okungabonakala kulungile kuwe, khuluma ngakho. Uyazi isimiso somntanakho kangcono kunanoma ubani.

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Memezela ukuCwantic Fibrosis Research

UScott noJada bakholelwa ukuthi ukuqwashisa nokweseka ucwaningo lweCF yizinto ezibaluleke kakhulu abangenza njengabazali ukusiza indodakazi yabo ibe nekusasa. Baye bakhuthele kakhulu ekukhuthazeni izidingo zalabo abane-CF esishayamthetho, batjela indaba yabo yokwandisa ukuqwashisa komphakathi nokusekela i-Cystic Fibrosis Foundation ngokuhlanganyela emisebenzini yokuxhaswa imali kanye nemikhankaso.