Abantwana bahlala nge-MS, nabo: Ibali elinye losapho

Umxholo

• Uhambo lokuqonda isifo
• Ukuqala unyango
• Iingcebiso kwezinye iintsapho
• Ukufumana inkxaso kuluntu lwaseMS
• Ukukhangela iindlela zokongeza ulonwabo
• Ukwenza ukhetho lokuphila ngendlela esempilweni njengentsapho
• Ukuba liqela kwaye ninamathele kunye
• Ukuthatha

Kwigumbi lokuhlala losapho lakwaValdez kukho itafile enqwenelekayo ephezulu nezikhongozeli zento enemibala ye-gooey. Ukwenza le "slime" yiminyaka eyisixhenxe u-Aaliyah ayithandayo. Wenza ibhetshi entsha yonke imihla, esongeza ubumenyemenye kunye nokuzama imibala eyahlukeneyo.

"Ifana ne-putty kodwa iyazolula," u-Aaliyah ucacisile.

I-goo ifika kuyo yonke indawo kwaye iqhuba utata ka-Aaliyah, uTaylor, uphambene kancinci. Usapho luphelelwe zizikhongozeli zeTupperware: zonke zizele yibhitumene. Kodwa akazumxelela ukuba ayeke. Ucinga ukuba lo msebenzi unokuba ngunyango kuba ufumana uAaliyah ukugxila kunye nokudlala ngezandla zakhe.

Kwiminyaka engama-6 ubudala, u-Aaliyah wafunyaniswa ene-multiple sclerosis (MS). Ngoku, abazali bakhe, uCarmen noTaylor, benza konke abanako ukuqinisekisa ukuba u-Aaliyah uhlala esempilweni kwaye wonwabile, ekhuthele ebuntwaneni. Oko kubandakanya ukuthatha u-Aaliyah ayokwenza imisebenzi eyonwabisayo emva konyango lwe-MS kunye nokuvumela i-batch yakhe ye-slime.

I-MS yimeko engaqhelekanga enxulunyaniswa nabantwana. Uninzi lwabantu abahlala ne-MS bafunyaniswa ukuba baneminyaka ephakathi kwama-20 nama-50 ubudala, ngokwe-National MS Society. Kodwa i-MS ichaphazela abantwana rhoqo kunokuba ucinga. Ngapha koko, ikliniki yaseCleveland ithi i-MS yobuntwana inokumela ukuya kuthi ga kwipesenti ezilishumi kuwo onke amatyala.

“Ndixelelwe ukuba une-MS ndothuka. Kwakungathi, ‘Hayi, abantwana abayifumani iMMS.’ Kwakunzima kakhulu, ”utshilo uCarmen kwiHealthline.

Yiyo loo nto uCarmen enze i-Instagram yeAaliyah ukuphakamisa ulwazi malunga ne-MS yabantwana. Kwiakhawunti, wabelana ngamabali malunga neempawu zika-Aaliyah, unyango, kunye nobomi bemihla ngemihla.

"Ndindedwa kulo nyaka uphela ndicinga ukuba ndim ndedwa emhlabeni onentombi encinci kangaka ene-MS," utshilo. "Ukuba ndinganceda abanye abazali, abanye oomama, ndonwabile kakhulu."

Unyaka okoko kwafunyaniswa isifo sika-Aaliyah ubunzima ku-Aaliyah kunye nosapho. Babelana ngebali labo ukusasaza ulwazi malunga nenyani ye-MS yabantwana.

Uhambo lokuqonda isifo

Uphawu lokuqala luka-Aaliyah lwalusisiyezi, kodwa iimpawu ezininzi zavela ngokuhamba kwexesha. Abazali bakhe baqaphela ukuba ubonakala engcangcazela xa bemvusa kusasa. Emva koko, ngenye imini epakini, u-Aaliyah wawa. UCarmen wabona ukuba urhuqa unyawo lwasekunene. Baye kwindibano yezonyango kwaye ugqirha wacebisa ukuba u-Aaliyah angabinangxaki.

U-Aaliyah wayeka ukurhuqa unyawo, kodwa ngaphezulu kwenyanga ezimbini, kwavela ezinye iimpawu. Waqala ukukhubeka kwizinyuko. UCarmen waqaphela ukuba izandla zika-Aaliyah zazingcangcazela kwaye wayenobunzima bokubhala. Utitshala uchaze umzuzwana xa u-Aaliyah ebonakala edidekile, ngokungathi akazazi ukuba uphi. Kwangolo suku lunye, abazali bakhe bamsa kwagqirha wabantwana.

Ugqirha ka-Aaliyah wacebisa ukuvavanywa kwemithambo-luvo - kodwa kungathatha malunga neveki ukufumana idinga. UCarmen noTaylor bavumile, kodwa bathi ukuba iimpawu ziya zisiba mbi, baya ngqo esibhedlele.

Ngeli veki, u-Aaliyah waqala ukuphulukana nomlinganiso wakhe kunye nokuwa, kwaye wakhalaza ngentloko. "Ngokwengqondo, yayingenguye," ukhumbule uTaylor. Bamthatha bamsa e-ER.

Esibhedlele, oogqirha bayalele iimvavanyo njengoko iimpawu zika-Aaliyah ziba mandundu. Zonke iimvavanyo zakhe zabonakala ziqhelekile, bada benza uhlalutyo olupheleleyo lweMRI yengqondo yakhe etyhila izilonda. Ugqirha we-neurologist wabaxelela ukuba uAaliyah kunokwenzeka ukuba une-MS.

UTaylor ukhumbula ukuba: "Saphelelwa ngumonde." “Kwakungathi ngumngcwabo. Yonke intsapho yafika. Yayiyeyona mini imbi ebomini bethu. ”

Emva kokuzisa u-Aaliyah ekhaya esibhedlele, uTaylor wathi baziva belahlekile. UCarmen wachitha iiyure ekhangela ulwazi kwi-intanethi. "Sahlala kuxinzelelo kwangoko," utshilo uTaylor kuHealthline. “Besintsha kule nto. Besingazi nto. ”

Kwiinyanga ezimbini kamva, emva kolunye uvavanyo lweMRI, ukufumanisa isifo kuka-Aaliyah kwaqinisekiswa kwaye wathunyelwa kugqirha uGregory Aaen, ingcali kwiziko lezonyango laseLoma Linda University. Uthethe nosapho malunga nezinto abanokuzikhetha, wabanika neencwadana ezimalunga namayeza akhoyo.

UGqirha Aaen ucebise ukuba u-Aaliyah aqale unyango kwangoko ukuze acothe ukuqhubela phambili kwesi sifo. Kodwa wabaxelela nokuba mabalinde. Kungenzeka ukuba u-Aaliyah angahamba ixesha elide ngaphandle kolunye uhlaselo.

Intsapho yagqiba ekubeni ilinde. Iziphumo ezinokubakho ebezingalindelekanga zibonakala zinzima kumntu omncinci njengoAaliyah.

UCarmen waphanda ngeendlela zonyango ezinokunceda. Kwiinyanga ezininzi, u-Aaliyah wayebonakala esenza kakuhle. "Besinethemba," utshilo uTaylor.

Ukuqala unyango

Malunga neenyanga ezisibhozo kamva, u-Aaliyah wakhalaza malunga "nokubona ezimbini zayo yonke into," kwaye usapho lwabuyela esibhedlele. Wafunyaniswa ukuba une-optic neuritis, uphawu lwe-MS apho i-optic nerve iya kuvutha. Ukuvavanywa kwengqondo kubonise izilonda ezintsha.

UGqirha Aaen ubongoze usapho ukuba luqale u-Aaliyah kunyango. UTaylor ukhumbule ithemba likagqirha lokuba u-Aaliyah uzakuba nobomi obude kwaye aphile, okoko nje baqala ukulwa nesi sifo. "Sithathe amandla akhe sathi," Kulungile, kufuneka sikwenze oku. "

Ugqirha ukhuthaze iyeza elifuna ukuba u-Aaliyah afumane ukumnika iiyure ezisixhenxe kanye ngeveki iiveki ezine. Phambi konyango lokuqala, abongikazi banikezela uCarmen noTaylor ngokuchaza umngcipheko kunye neziphumo ebezingalindelekanga.

"Kwakukubi nje ngenxa yeziphumo ebezingalindelekanga okanye izinto ezinokwenzeka," utshilo uTaylor. Sasilila sobabini. ”

UTaylor wathi u-Aaliyah wayekhala ngamanye amaxesha ngexesha lonyango, kodwa u-Aaliyah akazange akhumbule ukukhathazeka. Ukhumbule ukuba ngamaxesha ahlukeneyo wayefuna ukuba utata wakhe, okanye umama wakhe, okanye udadewabo bambambe ngesandla-kwaye bayenzile. Ukhumbule kwakhona ukuba uye wadlala indlu kwaye wakhwela kwinqwelo kwigumbi lokulinda.

Ngaphezulu kwenyanga kamva, u-Aaliyah uqhuba kakuhle. "Uyasebenza kakhulu," utshilo uTaylor kwiHealthline. Ngentsasa, usabona ukungcungcutheka, kodwa wongeze ngelithi, “yonke imihla uyenza kakuhle.”

Iingcebiso kwezinye iintsapho

Ngexesha elinzima ukusukela oko kwafunyaniswa isifo sika-Aaliyah, usapho lakwaValdez lufumene iindlela zokuhlala lomelele. "Sahlukile, sisondele," utshilo uCarmen kwiHealthline. Kwiintsapho ezijamelene nokuxilongwa kwe-MS, uCarmen noTaylor banethemba lokuba amava abo kunye neengcebiso ziluncedo.

Ukufumana inkxaso kuluntu lwaseMS

Ukusukela ebuntwaneni i-MS ingaqhelekanga, uCarmen uxelele i-Healthline ukuba kunzima ekuqaleni ukufumana inkxaso. Kodwa ukuzibandakanya kuluntu ngokubanzi lwe-MS kuye kwanceda. Kutshanje, usapho luthathe inxaxheba kwi-Walk MS: Greater Los Angeles.

Abantu abaninzi bebelapho ngee-vibes ezintle. Amandla, iatmosfera yonke yayintle, utshilo uCarmen. Sonke sikunandiphile njengentsapho. ”

Imithombo yeendaba kwezentlalo ikwangumthombo wenkxaso. Nge-Instagram, uCarmen unxibelelane nabanye abazali abanabantwana abancinci abane-MS. Babelana ngolwazi malunga nonyango kunye nendlela abantwana babo abaqhuba ngayo.

Ukukhangela iindlela zokongeza ulonwabo

Xa u-Aaliyah eqeshelwe iimvavanyo okanye unyango, abazali bakhe bajonge indlela yokongeza ulonwabo kumhla. Banokuphuma bayokutya okanye bamyeke akhethe into yokudlala entsha. "Sisoloko sizama ukuyonwabisa," utshilo uCarmen.

Ukongeza ukonwaba kunye nokusebenza, uTaylor wathenga inqwelo enokuthi ikhwele uAaliyah kunye nomntakwabo oneminyaka emine ubudala. Uyithenge nge-Walk: i-MS engqondweni, xa kunokwenzeka ukuba u-Aaliyah adinwe okanye abe nesiyezi, kodwa ucinga ukuba bazakuyisebenzisela ezinye iindlela zokuphuma. Uyinxibile ngomthunzi ukukhusela abantwana elangeni.

I-Aaliyah ikwanayo nenkawu entsha yokufaka izinto eyayifumana kuMnu Oscar Monkey, umbutho ongajonganga kwenza nzuzo uzinikele ekuncedeni abantwana abane-MS banxibelelane. Umbutho ubonelela "iinkawu ze-MS," ezikwabizwa ngokuba ngabahlobo baka-Oscar, kuye nakowuphi na umntwana one-MS ocela enye. UAaliyah wamthiya inkawu uHana. Uyakuthanda ukudanisa kunye naye aze ondle ii-apile zakhe, ukutya okuthandwa nguHana.

Ukwenza ukhetho lokuphila ngendlela esempilweni njengentsapho

Nangona kungekho ndlela ityiwayo ye-MS, ukutya kakuhle kunye nokuphila ngendlela esempilweni kunokuba luncedo kuye nabani na onesifo esinganyangekiyo-kubandakanya abantwana.

Kwintsapho yaseValdez, oko kuthetha ukuthintela ukutya okukhawulezayo kunye nokongeza izithako ezinesondlo ekutyeni. "Ndinabantwana abathandathu kwaye bonke bayakhetha, ke ndiyathanda ukufihla imifuno apho," utshilo uCarmen. Uzama ukudibanisa imifuno enjenge sipinatshi ekutyeni, kwaye ongeze iziqholo ezinje ngejinja kunye neturmeric. Baqala nokutya iquinoa endaweni yelayisi.

Ukuba liqela kwaye ninamathele kunye

UTaylor noCarmen baqaphele ukuba banamandla ahlukeneyo xa kufikwa ekulawuleni imeko ka-Aaliyah. Baye bachitha ixesha kunye no-Aaliyah esibhedlele nakwindawo yokuqeshwa ngugqirha, kodwa uTaylor uhlala engumzali ecaleni lakhe ngexesha lovavanyo olunzima. Umzekelo, uyamthuthuzela ukuba woyika phambi kwee-MRIs zakhe. UCarmen, kwelinye icala, ubandakanyeka ngakumbi kuphando lwe-MS, ukunxibelelana nezinye iintsapho, kunye nokwazisa malunga nale meko. "Siyancedisana kakuhle kweli dabi," utshilo uTaylor.

Imeko ka-Aaliyah izise notshintsho kubantakwabo. Kanye emva kokuchongwa kwesifo sakhe, uTaylor wabacela ukuba bamphathe kakuhle kwaye babe nomonde kuye. Emva kwexesha, iingcali zacebisa usapho ukuba lumphathe u-Aaliyah ngendlela abaqhele ukwenza ngayo, ukuze angakhuli azikhusele kakhulu. Usapho lusazulazula kutshintsho, kodwa uCarmen uthe, bebonke, abantwana babo balwa kancinci kunangaphambili. UTaylor wongeze, "Wonke umntu ujongene nayo ngokwahlukileyo, kodwa sonke sinaye."

Ukuthatha

"Ndifuna nje ukuba umhlaba wazi ukuba abantwana abancinci bafumana i-MS," utshilo uCarmen Healthline. Omnye wemiceli mngeni usapho olwajongana nalo kulo nyaka yayikukuziva ulilolo ukuza noxilongo luka-Aaliyah. Kodwa ukunxibelelana noluntu olukhulu lwe-MS wenze umahluko. UCarmen uthe ukuhamba iWalk: I-MS iluncede usapho ukuba luzive lodwa. "Ubona abantu abaninzi abakumlo ofanayo nawe, ke uziva womelele," wongeze watsho. "Uyabona yonke imali abayinyusayo, ngethemba lokuba ngenye imini liza kubakho iyeza lokunyanga."

Okwangoku, uTaylor uxelele uHealthline, "Sithatha usuku lube lunye ngexesha." Bajonge kakhulu impilo ka-Aaliyah, kunye nempilo yabantakwabo. "Ndiyabulela yonke imihla esidibana ngayo," wongeze watsho uTaylor.