Izingane Ziphila ne-MS, Too: Indaba Yomndeni Owodwa

-Delile

• Uhambo oluya ekuhlolweni
• Ukuqala ukwelashwa
• Iseluleko seminye imindeni
• Ukuthola ukwesekwa emphakathini we-MS
• Ufuna izindlela zokwengeza ubumnandi
• Ukwenza izinqumo zokuphila okunempilo njengomndeni
• Ukuba yiqembu futhi ninamathele ndawonye
• Ukuthatha

Egumbini lokuhlala lomndeni wakwaValdez kunethebula eligcwele inqwaba yeziqukathi zento enemibala ye-gooey. Ukwenza le "slime" kuyinto yokuzilibazisa eyintandokazi ka-Aaliyah oneminyaka engu-7. Wenza iqoqo elisha nsuku zonke, enezela ubucwebecwebe nokuzama imibala ehlukile.

"Kufana ne-putty kodwa iyelula," kuchaza u-Aaliyah.

I-goo ifika yonke indawo futhi iqhube ubaba ka-Aaliyah, uTaylor, ahlanye kancane. Umndeni uphelelwe yiziqukathi zeTupperware: zonke zigcwele isilima. Kodwa ngeke amtshele ukuthi akayeke. Ucabanga ukuthi lo msebenzi ungaba owelaphayo ngoba uthola u-Aaliyah ukuthi agxile futhi adlale ngezandla zakhe.

Eminyakeni eyisithupha ubudala, u-Aaliyah watholakala ene-multiple sclerosis (MS). Manje, abazali bakhe, uCarmen noTaylor, benza konke okusemandleni abo ukuqinisekisa ukuthi u-Aaliyah uhlala enempilo futhi unobuntwana obujabulisayo nobusebenzayo. Lokho kufaka phakathi ukukhipha u-Aaliyah ukuze enze imisebenzi emnandi ngemuva kokwelashwa kwakhe kwe-MS futhi avumele amaqoqo akhe omsebenzi wobuciko.

I-MS yisimo esingahlotshaniswa kakhulu nezingane. Iningi labantu abahlala ne-MS batholakala baphakathi kweminyaka engama-20 nengama-50, ngokusho kweNational MS Society. Kodwa i-MS ithinta izingane kaningi kunokuba ungacabanga. Eqinisweni, iCleveland Clinic iphawula ukuthi i-MS yobuntwana ingamelela amaphesenti ayi-10 awo wonke amacala.

“Ngesikhathi ngitshelwa ukuthi une-MS ngashaqeka. Bengifana nokuthi, ‘Cha, izingane azitholi i-MS.’ Kwakunzima kakhulu, ”kusho uCarmen etshela abeHealthline.

Kungakho uCarmen enze i-Instagram ye-Aaliyah yokuqwashisa nge-MS yezingane. Ku-akhawunti, wabelana ngezindaba ngezimpawu zika-Aaliyah, ukwelashwa, nempilo yansuku zonke.

"Bengihleli ngedwa kulo nyaka wonke ngicabanga ukuthi yimina ngedwa emhlabeni onendodakazi encane ngalena ene-MS," esho. "Uma ngingasiza abanye abazali, abanye omama, ngijabule kakhulu."

Unyaka selokhu kwatholakala ukutholakala kuka-Aaliyah kube nzima ku-Aaliyah nomndeni wakhe. Babelana ngendaba yabo ukusabalalisa ukuqwashisa ngeqiniso le-MS yezingane.

Uhambo oluya ekuhlolweni

Uphawu lokuqala luka-Aaliyah kwaba yisiyezi, kodwa izimpawu eziningi zavela ngokuhamba kwesikhathi. Abazali bakhe babona ukuthi ubebonakala ethuthumela ngesikhathi bemvusa ekuseni. Kwathi ngolunye usuku epaki, u-Aaliyah wawa. UCarmen wabona ukuthi uhudula unyawo lwesokudla. Baye emhlanganweni wokwelashwa kanti udokotela uphakamise ukuthi u-Aaliyah angahle abe nenkinga encane.

U-Aaliyah wayeka ukuhudula unyawo, kepha esikhathini esiyizinyanga ezimbili, kwavela ezinye izimpawu. Waqala ukukhubeka ezitebhisini. UCarmen uqaphele ukuthi izandla zika-Aaliyah bezithuthumela nokuthi ubenobunzima bokubhala. Uthisha uchaze umzuzwana lapho u-Aaliyah ebonakala edidekile, sengathi akazi ukuthi ukuphi. Ngalo lolo suku, abazali bakhe bamthatha baya kodokotela bezingane.

Udokotela ka-Aaliyah uncoma ukuhlolwa kwezinzwa - kodwa kungathatha cishe isonto ukuthola i-aphoyintimenti. UCarmen noTaylor bavumile, kodwa bathi uma izimpawu ziba zimbi kakhulu, bazoya esibhedlela.

Phakathi nalelo sonto, u-Aaliyah waqala ukwehluleka ukulinganisela futhi wawa, futhi wakhononda ngamakhanda. "Ngokwengqondo, wayengeyena uqobo," kukhumbula uTaylor. Bamyise e-ER.

Esibhedlela, odokotela bayalela ukuhlolwa njengoba izimpawu zika-Aaliyah ziba zimbi. Konke ukuhlolwa kwakhe kuvele njengokujwayelekile, baze benza ukuskena okugcwele kwe-MRI ebuchosheni bakhe okuveze izilonda. Udokotela wezinzwa wabatshela ukuthi kungenzeka ukuthi u-Aaliyah une-MS.

“Saphelelwa amandla,” kukhumbula uTaylor. “Bekuzwakala njengomngcwabo. Umndeni wonke weza. Kwakuwusuku nje olubi kunazo zonke ezimpilweni zethu. ”

Ngemuva kokuletha u-Aaliyah ekhaya evela esibhedlela, uTaylor wathi bazizwa belahlekile. UCarmen uchithe amahora amaningi efuna imininingwane ku-intanethi. "Sahlala sicindezelekile ngokushesha," kusho uTaylor etshela abeHealthline. “Besimusha kulokhu. Besingazi lutho. ”

Ezinyangeni ezimbili kamuva, ngemuva kokunye ukuskena kwe-MRI, ukuxilongwa kwe-MS kuka-Aaliyah kwaqinisekiswa futhi wadluliselwa kuDkt Gregory Aaen, onguchwepheshe eLoma Linda University Medical Center. Ukhulume nomndeni ngezinketho zawo, wawunika namapheshana ngemithi etholakalayo.

UDkt. Aaen wenze isincomo sokuthi u-Aaliyah aqale ukwelashwa ngokushesha ukuze anciphise ukuqhubeka kwesifo. Kepha wabatshela nokuthi bangalinda. Kungenzeka ukuthi u-Aaliyah ahambe isikhathi eside ngaphandle kokunye ukuhlaselwa.

Umndeni uthathe isinqumo sokulinda. Amandla okuba nemiphumela engemihle abonakale emakhulu kothile osemncane njengo-Aaliyah.

UCarmen ucwaninge izindlela zokwelapha ezihambisanayo ezingasiza. Izinyanga ezimbalwa, u-Aaliyah ubebonakala enza kahle. "Besinethemba," kusho uTaylor.

Ukuqala ukwelashwa

Cishe ezinyangeni eziyisishiyagalombili kamuva, u-Aaliyah wakhononda "ngokubona okubili kwakho konke," futhi umndeni wabuyela esibhedlela. Kutholwe ukuthi une-optic neuritis, okuwuphawu lwe-MS lapho kuvuvuka khona i-optic nerve. Iskena sobuchopho sikhombise izilonda ezintsha.

UDkt Aaen unxuse umndeni ukuthi uqale u-Aaliyah ngemithi yokwelashwa. UTaylor ukhumbule ithemba likadokotela lokuthi u-Aaliyah uzoba nempilo ende futhi alunge, inqobo nje uma beqala ukulwa nalesi sifo. "Sithathe amandla akhe ngathi," Kulungile, sidinga ukukwenza lokhu. '”

Udokotela uncoma umuthi odinga ukuthi u-Aaliyah athole ukumfakelwa kwamahora ayisikhombisa kanye ngesonto amasonto amane. Ngaphambi kokwelashwa kokuqala, abahlengikazi banikeza uCarmen noTaylor ngokudalulwa kwezingozi nemiphumela engemihle.

"Kwakukubi nje ngenxa yemiphumela emibi noma izinto ezingenzeka," kusho uTaylor. "Besikhala izinyembezi, sobabili."

UTaylor uthe u-Aaliyah wayekhala ngezikhathi ezithile ngesikhathi eselashwa, kodwa u-Aaliyah wayengakhumbuli ecasukile. Wakhumbula ukuthi ngezikhathi ezehlukene wayefuna ukuthi ubaba wakhe, noma umama wakhe, noma udadewabo bambambe ngesandla - nangempela benza kanjalo. Wabuye wakhumbula ukuthi wathola ukudlala indlu futhi wagibela enqoleni egumbini lokulinda.

Ngaphezu kwenyanga kamuva, u-Aaliyah wenza kahle. "Uyasebenza kakhulu," kusho uTaylor etshela abeHealthline. Ekuseni, usabona ukuqhaqhazela okuncane, kepha wengeza nokuthi “usuku lonke, wenza kahle.”

Iseluleko seminye imindeni

Ngezikhathi eziyinselele selokhu kwatholakala ukuthi u-Aaliyah utholakele, umndeni wakwaValdez uthole izindlela zokuhlala uqinile. "Sihlukile, sisondele," kusho uCarmen etshela abeHealthline. Emindenini ebhekene nokuxilongwa kwe-MS, uCarmen noTaylor banethemba lokuthi ulwazi lwabo kanye nezeluleko zabo kuyasiza.

Ukuthola ukwesekwa emphakathini we-MS

Njengoba i-MS yobuntwana ingajwayelekile, uCarmen utshele abeHealthline ukuthi bekunzima ekuqaleni ukuthola ukwesekwa. Kepha ukuzibandakanya emphakathini obanzi we-MS kusizile. Muva nje, umndeni ubambe iqhaza kwi-Walk MS: Greater Los Angeles.

“Abantu abaningi bebekhona benamazwi amaningi adlidlizayo. Amandla, wonke umoya ubumuhle, ”kusho uCarmen. Sonke sakujabulela njengomndeni. ”

Izinkundla zokuxhumana nazo zibe ngumthombo wokwesekwa. Nge-Instagram, uCarmen uxhumene nabanye abazali abanezingane ezincane ezine-MS. Babelana ngolwazi mayelana nokwelashwa nokuthi izingane zabo ziqhuba kanjani.

Ufuna izindlela zokwengeza ubumnandi

Lapho u-Aaliyah enama-aphoyintimenti okuhlolwa noma okwelashwa, abazali bakhe bafuna indlela yokwengeza ubumnandi osukwini. Bangaya ukuyodla noma bamvumele akhethe ithoyizi elisha. "Sihlala sizama ukumjabulisa," kusho uCarmen.

Ukwengeza ubumnandi nokusebenza, uTaylor wathenga inqola u-Aaliyah nomfowabo oneminyaka emine abangayigibela ndawonye. Wayithenga nge-Walk: MS engqondweni, uma kwenzeka u-Aaliyah ekhathala noma enesiyezi, kodwa ucabanga ukuthi bazoyisebenzisela okunye ukuphuma. Uyigqokise ngomthunzi ukuvikela izingane elangeni.

U-Aaliyah ubuye abe nenkawu entsha yokufaka izinto ayithole kuMnu. Oscar Monkey, inhlangano engenzi nzuzo ezinikele ekusizeni izingane ezine-MS ukuba zixhumane. Inhlangano ihlinzeka "ngezinkawu ze-MS," ezaziwa nangokuthi abangani baka-Oscar, kunoma iyiphi ingane ene-MS ecela eyodwa. U-Aaliyah waqamba inkawu yakhe ngokuthi uHana. Uthanda ukudansa naye futhi ondle ama-apula akhe, ukudla okuthandwa nguHana.

Ukwenza izinqumo zokuphila okunempilo njengomndeni

Yize kungekho kudla okuqondile kwe-MS, ukudla kahle nokuphila impilo enempilo kungasiza kunoma ngubani onesifo esingelapheki - kufaka phakathi izingane.

Emndenini wakwaValdez, lokho kusho ukugwema ukudla okusheshayo nokungeza izithako ezinomsoco ekudleni. "Nginezingane eziyisithupha futhi zonke ziyakhetha, ngakho-ke ngithanda ukufihla imifino lapho," kusho uCarmen. Uzama ukuhlanganisa imifino efana nesipinashi ekudleni, futhi engeza izinongo ezifana nojinja ne-turmeric. Baqala nokudla i-quinoa esikhundleni selayisi.

Ukuba yiqembu futhi ninamathele ndawonye

UTaylor noCarmen baphawule ukuthi banamandla ahlukene uma kuziwa ekuphatheni isimo sika-Aaliyah. Bobabili bachithe isikhathi no-Aaliyah esibhedlela nasekubekweni kukadokotela, kepha uTaylor uvame ukuba umzali eceleni kwakhe ngesikhathi sokuhlolwa okunzima. Isibonelo, uyamduduza uma esaba ngaphambi kwama-MRIs akhe. UCarmen, ngakolunye uhlangothi, ubandakanyeka kakhulu ekucwaningeni i-MS, ukuxhumana neminye imindeni, nokuqwashisa ngalesi simo. "Siyaphelelisana kahle kule mpi," kusho uTaylor.

Isimo sika-Aaliyah siphinde saletha izinguquko ezinganeni zakubo. Ngemuva nje kokuxilongwa, uTaylor wabacela ukuthi bamphathe kahle futhi babekezele. Kamuva, ongoti beluleke umndeni ukuthi uphathe u-Aaliyah njengoba bevame ukwenza, ukuze angakhuli evikeleke ngokweqile. Umndeni usazulazula kulezi zinguquko, kepha uCarmen uthe kukonke, izingane zabo zilwa okuncane kunakuqala. UTaylor wengeze wathi, "Wonke umuntu ubelokhu ebhekene nakho ngendlela ehlukile, kodwa sonke sinaye."

Ukuthatha

"Ngifuna nje umhlaba wazi ukuthi izingane lezi ezincane zithola i-MS," kusho uCarmen etshela abeHealthline. Enye yezinselelo umndeni owabhekana nazo kulo nyaka umuzwa wokuhlukaniswa oweza nokuxilongwa kuka-Aaliyah. Kepha ukuxhumana nomphakathi omkhulu we-MS kwenze umehluko. UCarmen uthe ukuya kwiWalk: MS kusize umndeni ukuthi uzizwe ungangedwa. "Ubona abantu abaningi abasempini efanayo neyakho, ngakho uzizwa unamandla," engeza. "Uyabona yonke imali abayiqoqayo, ngakho-ke ngethemba lokuthi ngelinye ilanga kuzoba khona ikhambi."

Okwamanje, uTaylor utshele abeHealthline, "Sithatha usuku olulodwa ngesikhathi." Banaka kakhulu impilo ka-Aaliyah, kanye nempilo yezingane zakubo. "Ngiyabonga nsuku zonke ukuthi siba ndawonye," wengeza uTaylor.