Nhau yeZoe yekurarama neCystic Fibrosis

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Reza Zoe

Zoe Ose musikana muduku anonakidza ane kunyemwerera kunofadza uye maziso makuru, maziso akanaka ari kuputika nekushuva, mufaro, uye kusava necheche mwana anenge achangotanga kuwana chishamiso chepasi rakamupoteredza. Zoe zvakare musikana muduku anogara ne cystic fibrosis (CF) , chirwere chinokonzera ucheche hwomwana husina hanya uye hunotyisidzira kumupamba wehupenyu chaihwo hwaanonyanya kufara nacho.

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Nhoroondo yeZoe

Vabereki veZoe, Scott naJada Ose, vanotanga kutanga kunyunyuta kuti chimwe chinhu chakanga chisina kunaka naZoe paakanga asina kudzokerazve kuzvarwa mumavhiki ake maviri okutanga ehupenyu. Zoe akazosvika pakuberekwa kwake uremu paakanga ava nemwedzi miviri, asi Scott naJada vaiziva kuti chimwe chinhu chakanga chisina kururama. Nguva dzose apo Zoe aidya, dumbu rake raizova rakaoma uye rakaputika, uye aizodanidzira mukutambudzika kusvikira izvo zvaiita sezvose zvaakanga adya zvaizodzoka zvakare zvakare mumucheka wake.

Mumwedzi gumi yekutanga yehupenyu hwaSoe, Scott naJada vakashanyira hofisi yevana kakawanda kuti vataurire zvinetso zvavo. Apo chiremba wevana ainge asina mhinduro yezviratidzo zveZoe, Scott naJada vakazvitsvakurudza voga vakatanga kukanganisika kuti Zoe inogona kuva ne cystic fibrosis. Nyanzvi yavo yevana haina kupindura pane zvavanetseka, naizvozvo Scott naJada vakatora Zoe kuchipatara chevana nokuda kwechipiri pfungwa. Apo paaivapo, pazuva rakapfuura Zoe rakashandura 1, kusafungirwa kwavo kwakasimbiswa. Zoe akaita zvechokwadi ine cystic fibrosis.

Zoe yakatanga kugamuchira kurapwa paCF yakachengetwa Care Centre. Iye zvino, pazera remakore mana, akakurira kuva anoshamisa 80th percentile pamatare ekukura. Upenyu hahuri nyore, uye iye achiri kurwisana nezvipingamupinyi nguva nenguva, asi nebasa guru rakaoma, Zoe iri kukura nekuita zvakanaka.

Mushure mokunge Zoe yakaonekwa , vamwe vanomwe Vose vana vakaedzwa. Vaviri vevana, avo vana vechiJada vana uye vana vaScot's step, vanawo vane cystic fibrosis. Vane kuchinja kwakanyanya kudarika Zoe, uye nerufaro, vane zviratidzo zvishoma chete zvechirwere.

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Zvokudya zveZoe nguva

Apo paakatanga kuongororwa, Zoe aiva nehuturo yekudya mumhino yake yaishandiswa kufudza yakakwirira-calori yakananga mudumbu chake uye kumubatsira kukura nokukurumidza. Scott naJada vanoyeuka kuti vaisambovata mumwedzi mitatu iyo Zoe yaive neipi yekudya-kutya kuti tube inogona kubuda kana kuvhara Zoe apo iye akarara. Vakagara pedyo naye usiku hwose kuti vave nechokwadi chokuti Zoe yakawana dhese rinokosha rezvokudya zvaaida.

Iye zvino Zoe anodya zvokudya zvepafura nguva dzose asi anofanira kudya zvakawanda zvepamusoro-koriori, zvokudya zvakanyanya-mafuta. Scott naJada vanoti izvi zvinogona kuva zvakaoma kuita kana uchibata nevana vane makore mana. Kufanana nevanhu vazhinji vane cystic fibrosis, Zoe inotorawo enzymes pose paanodya.

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Zuva Rokufananidzira reZee neMhuri Yake

Zoe inotora bronchodilator nemimwe mishonga inowanzopiwa kune avo vane CF. Zoe naJada vanofanira kuwana nguva yekunyora mishonga yakanyanyisa uye kurapwa kwemhepo kunowanikwa kakawanda zuva nezuva. Dzimwe nguva Zoe inoshandisa kuvhara kwechikwata chepamusoro-chepamusoro chekuvhara kwemhepo, uye dzimwe nguva Scott kana Jada vanoita chifukidzo chechifu chechipiotherapy . Apo Jada asiri kupa mishonga kuna Zoe, ari kushingaira kutarisira vanin'ina vaZoe nehanzvadzi dzaanodzidzawo mudzimba.

Scott anowedzera nguva yakawanda mumugwagwa, sezvaanofambisa anenge makiromita 150 kuti ashande zuva rimwe nerimwe uye makiromita 150 kudzokera kumusha zvakare kuti ave naZoe, Jada nevamwe vose veMhuri manheru manheru oga oga. Scott anofanira kufambisa izvi nokuti mushandi wake (muSanannah) anopa utano hwehutano hweZoe. Mhuri inofanira kugara muJudvilleville, kunyange zvakadaro, kuva pedyo neCF centre, apo Zoe inofanirwa kuenda kuchipatara.

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Zano raScott naJada

Kuburikidza nezvakaitika kwavari uye nekucherechedza zvakaitika kune vamwe, Scott naJada vakadzidza zvakawanda pamusoro pokurera vana mwana ane cystic fibrosis. Vanopa mazwi anotevera ekuchenjera kune vamwe vabereki mumamiriro avo ezvinhu:

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Ivai Vakashinga Mukutevera Kurongwa Kwemishonga

Scott anoti, "Chinhu chakakosha chero mubereki anogona kuita ndechekurangwa zvakakwana kuti ugare pane rimwe zuva rega regimen. Izvi ndizvo zvinofanira! Mwana ane CF anofanira kugara akaine utano sezvinobvira. Neizvi, ndinoreva zvose zvavanoda: ma-enzymes, mafungiro avo, marapirwo avo ekufema uye chifu chechipiotherapy (CPT). "

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Rangarira Zvinhu Zvose, Zuva Rese

Wana bhuku rekunyorera kana imwe sangano kuchengeta zvinyorwa zvezuva nezuva zvezviitiko zvinokosha. Scott naJada vanonyora nguva, chiyero uye zita remishonga yese uye kurapwa kwemhepo kwemaawa iyo Zoe inotora zuva rimwe nerimwe. Vanonyorawo nezvezvokudya zvaanodya, micherechedzo yaakapiwa uye tsanangudzo yehukuru, ruvara, kusagadzikana, uye nguva yakawanda yezvigaro zvake. Vanonyora chero zviratidzo zvinenge zvisati zviri zveZoe, uye vanounza zvose izvi ruzivo navo pavanoona boka reCF. Scott naJada vanoti izvi zvinyorwa zvinopa ruzivo rwakakosha rwekubatsira kuona chinokonzera matambudziko pavanomuka.

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Yeuka kuti Uzvichengete Iwe Semwana Wako

Unofanirwa kugara wakasimba zvakakwana kuti utsungirire muviri, mupfungwa uye mupfungwa kunetseka kwekutarisira mwana asingararami. Iwe uchadawo kugara wakasimba zvakakwana kuti uwane zvinodiwa zvevana vako vane utano.

Scott uye Jada vane mhuri huru, saka ivo vakafanirwa kugadzirisa, vachiwana nzira dzekuenzanisa nguva yavo pakati pekusangana kwezvido zveZoe nezvido zvevamwe vana. Vanopa mazano vabereki kuti vabatanidzwe neboka rekutsigirwa kana network pamwe nevamwe vabereki vevana vane CF.

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Usave Uchitya Kubvunza Vatapi Vehutano Hwako

Scott naJada vakasimbisa kuti, nepo zvakanaka kuti uvimbire vanachiremba navanamukoti, zvakare zvakakosha kuyeuka kuti vanogona kutadza kana kuita zvikanganiso. Ramba uine ziso rakarinda, uye kana chimwe chinhu chisingaoneki chakanaka kwauri, taura nezvazvo. Iwe unoziva tsika yevana vako iri nani kudarika ani zvake.

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Mutsigiri weCystic Fibrosis Research

Scott uye Jada vanotenda kuti kuwedzera kukuziva nekusimbisa tsvakurudzo yeCF ndiyo zvinhu zvinokosha zvavanogona kuita sevabereki kubatsira mwanasikana wavo kuti ave neramangwana. Vave vachishingaira mukurudzira zvidikanwi zvevaya vane CF mumutemo, vachitaurira nyaya yavo kuti vawedzere ruzivo rwevanhu uye vatsigire Cystic Fibrosis Foundation kuburikidza nekutora chikwereti pakudzidzisa zviitiko nemakambani.