Vana Vanorarama neMS, Zvakare: Imwe Nyaya Yemhuri

Zvemukati

• Rwendo rwekuongororwa
• Kutanga kurapwa
• Zano kune dzimwe mhuri
• Kutsvaga rutsigiro munharaunda yeMS
• Kutsvaga nzira dzekuwedzera mafaro
• Kuita sarudzo dzakanaka dzehupenyu semhuri
• Kuve timu uye kunamatira pamwechete
• Kutora

Muimba yekutandarira yemhuri yeValdez pane tafura yakaunganidzwa kumusoro nemidziyo yechinhu chine gooey chemavara. Kugadzira iyi "slime" ane makore manomwe-ekukura aAaliyah aanofarira. Iye anogadzira batch idzva mazuva ese, achiwedzera kupenya uye kuyedza akasiyana mavara.

"Zvakafanana neputi asi zvinotambanudza," Aaliyah akatsanangura.

Iyo goo inosvika kwese kwese uye inotyaira baba vaAaliyah, Taylor, kupenga zvishoma. Mhuri yapera midziyo yeTupperware: dzizere nesipo. Asi haamuudze kuti amire. Anofunga kuti chiitiko ichi chinogona kunge chiri chekurapa nekuti zvinoita kuti Aaliyah anyanye kufunga nekutamba nemaoko ake.

Pazera remakore matanhatu, Aaliyah akaonekwa aine multiple sclerosis (MS). Zvino, vabereki vake, Carmen naTaylor, vanoita zvese zvavanogona kuti vaone kuti Aaliyah anoramba aine hutano uye aine hunakidze, hushingi hwehudiki. Izvi zvinosanganisira kutora Aaliyah kuenda kunze kunonakidzwa zviitiko mushure mekurapwa kwake kweMS uye nekumuregedza mateki echikwata.

MS ndiwo mamiriro asiri anowanzoenderana nevana. Vanhu vazhinji vanogara neMS vanoonekwa vari pakati pemakore makumi maviri nemakumi mashanu, maererano neNational MS Society. Asi MS inobata vana kakawanda kupfuura zvaunogona kufunga. Muchokwadi, iyo Cleveland Clinic inocherekedza kuti hudiki MS inogona kumiririra kusvika gumi muzana yezviitiko zvese.

“Pandakaudzwa kuti aive neMS ndakavhunduka. Ndanga ndakafanana, 'Kwete, vana havawani MS.' Zvanga zvakaoma, "Carmen akaudza Healthline.

Ndosaka Carmen akagadzira Instagram yeAaliyah kusimudzira kuziva nezvehudiki MS. Paakaundi, anogovera nyaya nezve Aaliyah zviratidzo, kurapwa, uye hupenyu hwezuva nezuva.

"Ndanga ndiri ndega gore rese ndichifunga kuti ndini ndega pasi pano ndine mwanasikana mudiki uyu ane MS," akadaro. "Kana ndikakwanisa kubatsira vamwe vabereki, vamwe amai, ini ndiri kutofara".

Gore kubva kuongororwa kwaAaliyah rave rakaoma kuna Aaliyah nemhuri yake. Vari kugoverana nyaya yavo yekuparadzira kuziva nezve chokwadi chevana veMS MS.

Rwendo rwekuongororwa

Chiratidzo chekutanga chaAaliyah chaive nedzungu, asi zvimwe zviratidzo zvakaonekwa nekufamba kwenguva. Vabereki vake vakaona kuti airatidzika kuzununguka pavakamumutsa mangwanani. Zvino, rimwe zuva mupaki, Aaliyah akadonha. Carmen akaona kuti anga achidhonza tsoka yake yekurudyi. Vakaenda kunorapwa uye chiremba akataura kuti Aaliyah anogona kunge aine kamwana kadiki.

Aaliyah akamira achikweva tsoka yake, asi pamusoro pemwedzi miviri, zvimwe zviratidzo zvakaonekwa. Akatanga kudzedzereka pamatanho. Carmen akaona kuti maoko aAaliyah aidedera uye kuti ainetseka kunyora. Mumwe mudzidzisi akatsanangura imwe nguva apo Aaliyah akaonekwa kusagadzikana, sekunge aisaziva kwaaive. Zuva rimwe chetero, vabereki vake vakamutora kuti anoona chiremba wevana.

Chiremba waAaliyah akakurudzira kuongororwa kwetsinga - asi zvaizotora rinenge vhiki kuti uwane musangano. Carmen naTaylor vakabvumirana, asi vakati kana zviratidzo zvikanyanya, vaizonanga kuchipatara.

Pakati pevhiki iyoyo, Aaliyah akatanga kurasikirwa nemwero uye akadonha, uye akanyunyuta pamusoro pemusoro. "Pfungwa, anga asiri iye," Taylor akayeuka. Vakaenda naye kuE ER.

Kuchipatara, vanachiremba vakaraira kuyedzwa sezvo zviratidzo zveAaliyah zvakawedzera. Yese miedzo yake yakaratidzika kunge yakajairika, kudzamara vaita yakazara MRI scan yehuropi hwake yakaratidza maronda. Nyanzvi yezveuropi yakavaudza kuti Aaliyah angangove aine MS.

"Takazvidzora," Taylor akayeuka. “Kwaive kunzwa sekunge mariro. Mhuri yese yakauya. Raingova zuva rakaipisisa paupenyu hwedu. ”

Mushure mekunge vaunza Aaliyah kumba kubva kuchipatara, Taylor akati vanonzwa kurasika. Carmen akapedza maawa achitsvaga ruzivo painternet. "Takaramba takamira mukuora mwoyo nekukasira," Taylor akaudza Healthline. “Takanga tiri vatsva kune izvi. Takanga tisingazivi. ”

Mwedzi miviri gare gare, mushure meimwe MRI scan, Aaliyah's MS kuongororwa kwakasimbiswa uye akaendeswa kuna Dr. Gregory Aaen, nyanzvi kuLoma Linda University Medical Center. Akataura kumhuri nezvezvingasarudzwa, uye akavapa mapepa pamusoro pemishonga iripo.

Dr. Aaen vakakurudzira kuti Aaliyah atange kurapwa ipapo ipapo kudzora kufambira mberi kwechirwere. Asi akavaudzawo kuti vaigona kumirira. Izvo zvaigona kuti Aaliyah aigona kutora nguva yakareba pasina kumwe kurwiswa.

Mhuri yakasarudza kumirira. Iyo mikana yemhedzisiro mhedzisiro yakaita kunge inorema kune mumwe munhu ari mudiki saAaliyah.

Carmen akaongorora marapirwo ekuwedzera anogona kubatsira. Kwemwedzi yakati wandei, Aaliyah airatidzika kunge ari kuita mushe. "Takanga tine tariro," akadaro Taylor.

Kutanga kurapwa

Anenge mwedzi misere gare gare, Aaliyah akanyunyuta nezve "kuona zviviri zvezvose," uye mhuri yakadzokera kuchipatara. Akaonekwa aine optic neuritis, chiratidzo cheMS mune iyo optic nerve inopiswa. Kuongorora kwehuropi kwakaratidza maronda matsva.

Dr. Aaen vakakurudzira mhuri kuti itange Aaliyah pakurapwa. Taylor akarangarira tariro yechiremba yekuti Aaliyah aizove nehupenyu hwakareba uye ave mushe, chero bedzi vakatanga kurwisa chirwere ichi. "Takatora simba rake ndokuti," Zvakanaka, tinofanirwa kuita izvi. "

Chiremba akakurudzira mushonga waida kuti Aaliyah agamuchire kuiswa kwemaawa manomwe kamwe pasvondo kwevhiki ina. Pamberi pekutanga kurapwa, manesi akapa Carmen naTaylor kuburitswa kwenjodzi pamwe nemhedzisiro.

"Zvaingotyisa nekuda kwemhedzisiro kana zvinhu zvinogona kuitika," akadaro Taylor. "Tose taichema, tiri vaviri."

Taylor akati Aaliyah akachema dzimwe nguva panguva yekurapwa, asi Aaliyah haana kurangarira achitsamwa. Akarangarira kuti panguva dzakasiyana aida baba vake, kana amai vake, kana hanzvadzi yake kuti vamubate ruoko - uye vakadaro. Akarangarirawo kuti akasvika pakutamba imba nekukwira mungoro muimba yekumirira.

Anopfuura mwedzi gare gare, Aaliyah ari kuita zvakanaka. "Ari kushingaira," Taylor akaudza Healthline. Mangwanani, achiri kungoona kuzununguka, asi akawedzera kuti "muzuva rose, ari kuita zvakanaka."

Zano kune dzimwe mhuri

Kuburikidza nenguva dzakaoma kubva pakuonekwa kwaAaliyah, mhuri yeValdez yawana nzira dzekugara dzakasimba. "Isu takasiyana, isu tiri padyo," Carmen akaudza Healthline. Kune mhuri dzakatarisana neMS kuongororwa, Carmen naT Taylor vanovimba tariro yavo neruzivo zvinobatsira.

Kutsvaga rutsigiro munharaunda yeMS

Kubvira paudiki MS kwakajairika, Carmen akaudza Healthline kuti zvaive zvakaoma pakutanga kuwana rutsigiro. Asi kubatanidzwa munharaunda yakakura yeMS kwabatsira. Nguva pfupi yadarika, mhuri yatora chikamu muWatch MS: Greater Los Angeles.

"Vanhu vazhinji vanga varipo vane yakawanda yakanaka vibes. Simba, mhepo yese yaive yakanaka, ”akadaro Carmen. "Tese takainakidzwa semhuri."

Zvemagariro midhiya zvave zvakare sosi yekutsigira. Kuburikidza ne Instagram, Carmen akabatana nevamwe vabereki vane vana vadiki vane MS. Ivo vanogovana ruzivo nezve marapirwo uye maitiro evana vavo.

Kutsvaga nzira dzekuwedzera mafaro

Kana Aaliyah aine nguva dzekuongororwa kana kurapwa, vabereki vake vanotsvaga nzira yekuwedzera zvinonakidza kuzuva. Vanogona kuenda kunodya kana kumurega asarudze toy nyowani. "Tinogara tichiedza kuzviita zvinomufadza," akadaro Carmen.

Kuwedzera kunakidza uye kuita, Taylor akatenga ngoro iyo Aaliyah nemukoma wake ane makore mana ekuberekwa vanogona kukwira pamwe chete. Akaitenga naFamba: MS mupfungwa, kana Aaliyah akaneta kana kuita dzungu, asi anofunga kuti vanozoishandisa kune kumwe kubuda. Akachipfekedza nemumvuri kudzivirira vana kubva kuzuva.

Aaliyah zvakare ane chitsva chakaputirwa chitoyi tsoko iyo yaakatambira kubva kuna VaOscar Monkey, sangano risingabatsiri rakazvipira kubatsira vana vane MS kubatana. Sangano rinopa "tsoko dzeMS," dzinozivikanwawo sevanoshamwaridzana vaOscar, kune chero mwana ane MS anokumbira imwe. Aaliyah akatumidza tsoko yake Hana. Anofarira kutamba naye uye kumudyisa maapuro, chikafu chaHana chaanofarira.

Kuita sarudzo dzakanaka dzehupenyu semhuri

Kunyangwe pasina chikafu chakatarwa cheMS, kudya zvakanaka uye kurarama hupenyu hune hutano kunogona kubatsira kune chero munhu ane chirwere chisingaperi - kusanganisira vana.

Zvemhuri yeValdez, izvo zvinoreva kudzivirira chikafu chinokurumidza uye nekuwedzera zvinoumba zvinovaka muviri pakudya. "Ndine vana vatanhatu uye vese vakasarudzika, saka ndinoita sekuhwanda miriwo imomo," akadaro Carmen. Iye anoedza kusanganisa miriwo senge sipinachi muchikafu, uye achiwedzera zvinonhuwira senge ginger uye turmeric. Vakatangawo kudya quinoa pachinzvimbo chemupunga.

Kuve timu uye kunamatira pamwechete

Taylor naCarmen vakacherekedza kuti vane masimba akasiyana kana zvasvika pakugadzirisa mamiriro aAaliyah. Ivo vaviri vakapedza nguva naAaliyah kuchipatara uye panguva dzakagadzwa nachiremba, asi Taylor anowanzo kuve mubereki parutivi rwake panguva yemiyedzo yakaoma. Semuenzaniso, anomunyaradza kana achitya pamberi peMRI. Carmen, kune rimwe divi, ane chekuita nekutsvaga MS, kutaurirana nedzimwe mhuri, uye nekusimudzira kuziva nezve mamiriro acho. "Tinowirirana zvakanaka muhondo iyi," akadaro Taylor.

Mamiriro aAaliyah akaunzawo shanduko kune vanun'una vake. Achangobva kuongororwa, Taylor akavabvunza kuti vamuitire zvakanaka uye kuti vave nemoyo murefu naye. Gare gare, nyanzvi dzakakurudzira mhuri kuti iitire Aaliyah sezvaaizoita, kuitira kuti arege kukura zvakanyanya. Mhuri ichiri kufamba neshanduko, asi Carmen akataura kuti pane zvese, vana vavo vanorwa zvishoma pane zvakapfuura. Taylor akawedzera, "Wese munhu anga achinetsana nazvo zvakasiyana, asi isu tese tinaye."

Kutora

"Ndiri kungoda kuti nyika izive kuti vana vadiki ava vanowana MS," Carmen akaudza Healthline. Rimwe rematambudziko akasangana nemhuri gore rino yaive yekunzwa kusurukirwa kwakauya neAaliyah kuongororwa. Asi kubatana nenzvimbo hombe yeMS kwaita mutsauko. Carmen akati achienda kuFamba: MS yakabatsira mhuri kuti inzwe kushoma vega. "Unoona vanhu vazhinji vari muhondo imwe newe, saka unonzwa kusimba," akawedzera. "Munoona mari yese yavari kutsvaga, saka ndinovimba nerimwe zuva kuchave nemushonga."

Parizvino, Taylor akaudza Healthline, "Tinotora zuva rimwe chete panguva." Ivo vanoteerera zvakanyanya kune hutano hwaAaliyah, uye hutano hwehama dzake. "Ndinotenda zuva rega rega ratinaro pamwe chete," akadaro Taylor.