Ana Amakhala ndi MS, Too: Nkhani Ya Banja Limodzi

Zamkati

• Ulendo wopita kuchipatala
• Kuyambira mankhwala
• Malangizo kwa mabanja ena
• Kupeza chithandizo mdera la MS
• Kuyang'ana njira zowonjezera zosangalatsa
• Kupanga zosankha zabwino pabanja
• Kukhala gulu ndikumamatirana
• Kutenga

M'chipinda chochezera cha banja la Valdez pali tebulo lodzaza ndi zotengera zokongola za gooey. Kupanga "slime" iyi ndi zomwe amakonda kwambiri Aaliyah wazaka 7. Amapanga mtanda watsopano tsiku lililonse, kuwonjezera zonyezimira ndikuyesa mitundu yosiyanasiyana.

"Zili ngati putty koma zimatambasula," Aaliyah adalongosola.

Goo amafika paliponse ndikuyendetsa abambo a Aaliyah, Taylor, mopenga pang'ono. Banja latha m'makontena a Tupperware: onse ali odzaza ndi miyala. Koma samuuza kuti asiye. Akuganiza kuti ntchitoyi itha kukhala yothandizira chifukwa zimapangitsa Aaliyah kuti azingoganizira ndikusewera ndi manja ake.

Ali ndi zaka 6, Aaliyah adapezeka ndi multiple sclerosis (MS). Tsopano, makolo ake, Carmen ndi Taylor, achita zonse zomwe angathe kuti atsimikizire kuti Aaliyah amakhalabe wathanzi komanso ali ndiubwana wosangalala komanso wachangu. Izi zikuphatikiza kupita ndi Aaliyah kokachita zosangalatsa pambuyo pa chithandizo chake cha MS ndikulola zida zake.

MS ndi vuto lomwe nthawi zambiri silimalumikizidwa ndi ana. Anthu ambiri omwe amakhala ndi MS amapezeka azaka zapakati pa 20 ndi 50, malinga ndi National MS Society. Koma MS imakhudza ana nthawi zambiri kuposa momwe mungaganizire. M'malo mwake, Cleveland Clinic imanena kuti ubwana wa MS ungayimire mpaka 10 peresenti ya milandu yonse.

"Nditauzidwa kuti ali ndi MS ndidadabwa. Ndinali ngati, 'Ayi, ana samapeza MS.' Zinali zovuta kwambiri, "Carmen adauza Healthline.

Ichi ndichifukwa chake Carmen adapanga Instagram ya Aaliyah kuti adziwitse ana zaubwana MS. Pa akauntiyi, amagawana nthano za zomwe Aaliyah adalandira, chithandizo chake, komanso moyo watsiku ndi tsiku.

"Ndinali ndekha chaka chino chonse ndikuganiza kuti ndine ndekha padziko lapansi yemwe ndili ndi mwana wamkazi wachichepere yemwe ali ndi MS," adatero. "Ngati ndingathe kuthandiza makolo ena, amayi ena, ndine wokondwa kwambiri."

Chaka chomwe Aaliyah adapezeka ndi matendawa chakhala chovuta kwa Aaliyah ndi banja lake. Akugawana nkhani yawo kuti afalitse kuzindikira za zenizeni za MS za ana.

Ulendo wopita kuchipatala

Chizindikiro choyamba cha Aaliyah chinali chizungulire, koma zizindikiro zina zimawonekera pakapita nthawi. Makolo ake adazindikira kuti amaoneka ngati wagwedezeka akamudzutsa m'mawa. Kenako, tsiku lina pakiyo, Aaliyah adagwa. Carmen anawona kuti akukoka phazi lake lamanja. Adapita kukakumana ndi azachipatala ndipo adotolo adati Aaliyah atha kudwala pang'ono.

Aaliyah anasiya kukoka phazi lake, koma kwa miyezi iwiri, zizindikiro zina zidawonekera. Anayamba kukhumudwa pamakwerero. Carmen adazindikira kuti manja a Aaliyah anali akunjenjemera komanso kuti amavutika kulemba. Mphunzitsi adalongosola mphindi pomwe Aaliyah adawoneka wosokonezeka, ngati kuti sakudziwa komwe anali. Tsiku lomwelo, makolo ake anamutengera kukaonana ndi dokotala wa ana.

Dokotala wa Aaliyah adalimbikitsa kuyesa kwamitsempha yamagazi - koma zimatenga pafupifupi sabata kuti mupeze nthawi yokumana. Carmen ndi Taylor adagwirizana, koma adati ngati zizolowezi zikukulira, apita kuchipatala.

Sabata ija, Aaliyah adayamba kuchepa ndikugwa, ndipo adadandaula za mutu. "M'maganizo, sanali yekha," akukumbukira Taylor. Anapita naye ku ER.

Kuchipatala, madokotala adalamula kuti ayesedwe pamene zizindikiro za Aaliyah zidakulirakulira. Mayeso ake onse adawoneka ngati abwinobwino, mpaka atamuyesa ubongo wawo wonse wa MRI womwe udawulula zotupa. Katswiri wa matenda a ubongo anawauza kuti Aaliyah ayenera kuti anali ndi MS.

Taylor adakumbukira kuti: "Tinasowa mtendere." “Zinali zomvekera ngati maliro. Banja lonse lidabwera. Linali tsiku loipa kwambiri pa moyo wathu. ”

Atabweretsa Aaliyah kunyumba kwawo kuchokera kuchipatala, Taylor adati akumva kuti atayika. Carmen adakhala maola ambiri akufufuza zambiri pa intaneti. Taylor adati kwa Healthline: "Tidakhumudwa pomwepo." “Tinali achilendo kwa izi. Sitinadziwe chilichonse. ”

Patadutsa miyezi iwiri, atayesanso MRI, Aaliyah's MS diagnostic adatsimikizika ndipo adatumizidwa kwa Dr. Gregory Aaen, katswiri ku Loma Linda University Medical Center. Adalankhula ndi banjali za zomwe angasankhe, ndikuwapatsa timapepala tokhudza mankhwala omwe alipo.

Aaen adalimbikitsa kuti Aaliyah ayambe kulandira chithandizo nthawi yomweyo kuti achepetse kufalikira kwa matendawa. Koma anawauzanso kuti akhoza kudikira. Zinali zotheka kuti Aaliyah atha kukhala nthawi yayitali popanda kuukira kwina.

Banja linaganiza zodikira. Zomwe zingakhale ndi zotsatirapo zoyipa zimawoneka ngati zopweteka kwa wachinyamata ngati Aaliyah.

Carmen anafufuza mankhwala othandizira omwe angathandize. Kwa miyezi ingapo, Aaliyah akuwoneka kuti akuchita bwino. "Tinali ndi chiyembekezo," adatero Taylor.

Kuyambira mankhwala

Pafupifupi miyezi isanu ndi itatu pambuyo pake, Aaliyah adadandaula za "kuwona zonse ziwiri," ndipo banjali lidabwerera kuchipatala. Anapezeka kuti ali ndi optic neuritis, chizindikiro cha MS momwe mitsempha yotupa imayaka. Kusanthula kwaubongo kunawonetsa zotupa zatsopano.

Dr.Aaen adalimbikitsa banjali kuti liyambe Aaliyah pachipatala. Taylor adakumbukira chiyembekezo cha adotolo kuti Aaliyah akhala ndi moyo wautali ndikukhala bwino, bola akadayamba kulimbana ndi matendawa. "Tidatenga mphamvu zake ndikuti," Chabwino, tiyenera kuchita izi. "

Adotolo adalangiza mankhwala omwe amafuna kuti Aaliyah alandire kulowetsedwa kwa maola asanu ndi awiri kamodzi pamlungu kwa milungu inayi. Asanalandire chithandizo choyamba, anamwino anapatsa Carmen ndi Taylor malipoti a zoopsa ndi zoyipa zake.

"Zinali zowopsa chifukwa cha zoyipa kapena zinthu zomwe zitha kuchitika," atero a Taylor. Tonse tinali tikulira. ”

Taylor adati Aaliyah adalira nthawi zina panthawi yachipatala, koma Aaliyah sanakumbukire kukwiya. Anakumbukira kuti nthawi zosiyanasiyana amafuna kuti abambo ake, kapena amayi ake, kapena mlongo wake amugwire dzanja - ndipo adatero. Anakumbukiranso kuti amayenera kusewera nyumba ndikukwera ngolo mu chipinda chodikirira.

Patadutsa mwezi umodzi, Aaliyah akuchita bwino. "Ali wokangalika kwambiri," Taylor adauza Healthline. M'mawa, amaonabe kuti wagwedezeka, koma adaonjezeranso kuti "tsiku lonse, akuchita bwino."

Malangizo kwa mabanja ena

Kudzera munthawi zovuta kuyambira pomwe Aaliyah adapezeka, banja la Valdez lapeza njira zokhalira olimba. "Ndife osiyana, tili pafupi," Carmen adauza Healthline. Kwa mabanja omwe akukumana ndi matenda a MS, Carmen ndi Taylor akuyembekeza kuti zomwe akumana nazo ndi malangizo ndizothandiza.

Kupeza chithandizo mdera la MS

Popeza ubwana wa MS siwachilendo, Carmen adauza Healthline kuti zinali zovuta poyamba kupeza chithandizo. Koma kutenga nawo gawo pagulu lonse la MS kwathandiza. Posachedwa, banjali lidatenga nawo gawo ku Walk MS: Greater Los Angeles.

"Anthu ambiri anali komweko ndi mayimbidwe abwino ambiri. Mphamvu, mlengalenga wonse zidali zabwino, "adatero Carmen. Tonse tinasangalala monga banja. ”

Ma social media nawonso akhala othandizira. Kudzera mu Instagram, Carmen adalumikizana ndi makolo ena omwe ali ndi ana aang'ono omwe ali ndi MS. Amagawana zambiri zamankhwala komanso momwe ana awo akuchitira.

Kuyang'ana njira zowonjezera zosangalatsa

Aaliyah akakhala ndi nthawi yopita kukayezetsa kapena kulandira chithandizo, makolo ake amafunafuna njira yowonjezeramo zosangalatsa patsikuli. Amatha kupita kukadya kapena kumulola kuti asankhe chidole chatsopano. "Nthawi zonse timayesetsa kuti timusangalatse," adatero Carmen.

Kuphatikiza zosangalatsa komanso kuchitapo kanthu, Taylor adagula ngolo yomwe Aaliyah ndi mchimwene wake wazaka zinayi amatha kuyendera limodzi. Adagula ndi Walk: MS m'malingaliro, ngati Aaliyah atatopa kapena kuchita chizungulire, koma akuganiza kuti adzagwiritsa ntchito maulendo ena. Wavala chovala ndi mthunzi kuti ateteze ana ku dzuwa.

Aaliyah alinso ndi nyani watsopano wazoseweretsa yemwe adalandira kuchokera kwa Mr. Oscar Monkey, bungwe lopanda phindu lodzipereka kuthandiza ana omwe ali ndi MS kulumikizana. Bungweli limapereka "anyani a MS," omwe amadziwikanso kuti mabwenzi a Oscar, kwa mwana aliyense yemwe ali ndi MS yemwe amupempha. Aaliyah anamutcha nyani Hana. Amakonda kuvina naye ndikudyetsa maapulo ake, chakudya chomwe Hannah amakonda kwambiri.

Kupanga zosankha zabwino pabanja

Ngakhale kulibe zakudya zinazake za MS, kudya bwino ndikukhala moyo wathanzi kumatha kukhala kothandiza kwa aliyense amene ali ndi matenda osachiritsika - kuphatikiza ana.

Kwa banja la a Valdez, izi zikutanthauza kupewa kupewa chakudya chofulumira ndikuwonjezera zakudya zopatsa thanzi. "Ndili ndi ana asanu ndi mmodzi ndipo onse ndi osankha, chifukwa chake ndimakhala ngati ndikubisa masamba kumeneko," adatero Carmen. Amayesa kusakaniza masamba monga sipinachi mu chakudya, ndikuwonjezera zonunkhira monga ginger ndi turmeric. Anayambanso kudya quinoa m'malo mwa mpunga.

Kukhala gulu ndikumamatirana

Taylor ndi Carmen adazindikira kuti ali ndi mphamvu zosiyana pankhani yakusamalira chikhalidwe cha Aaliyah. Onsewa adakhala nthawi ndi Aaliyah kuchipatala komanso nthawi yoonana ndi adotolo, koma Taylor nthawi zambiri amakhala kholo kumbali yake pakuyesedwa kovuta. Mwachitsanzo, amamutonthoza ngati akuwopa pamaso pa MRIs ake. Komano, Carmen amatenga nawo mbali kwambiri pakufufuza za MS, kulumikizana ndi mabanja ena, ndikuwadziwitsa za vutoli. "Timathandizana bwino pankhondoyi," adatero Taylor.

Matenda a Aaliyah adabweretsanso kusintha kwa abale ake. Atangomupeza, Taylor adawafunsa kuti amusamalire bwino komanso kuti akhale oleza mtima naye. Pambuyo pake, akatswiri adalangiza banjali kuti lizichitira Aaliyah monga momwe amachitira, kuti asakula mopitilira muyeso. Banja likuyang'anabe zosinthazi, koma Carmen adati zonse, ana awo amamenya nkhondo zochepa kuposa kale. Taylor adanenanso, "Aliyense wakhala akuvutika mosiyana, koma tonse tili naye."

Kutenga

"Ndikungofuna kuti dziko lidziwe kuti ana achichepere amatenga MS," Carmen adauza Healthline. Limodzi mwamavuto omwe banja lidakumana nawo chaka chino ndikumva kudzipatula komwe kudabwera ndikudziwika kwa Aaliyah. Koma kulumikizana ndi gulu lalikulu la MS kwasintha. Carmen adati kupita ku Walk: MS idathandizira banjali kuti lisamve nokha. "Mukuwona anthu ambiri omwe ali pankhondo yomweyi ndi inu, ndiye kuti mumakhala olimba," adanenanso. "Mukuwona ndalama zonse zomwe akweza, ndiye kuti tsiku lina padzakhala mankhwala."

Pakadali pano, Taylor adauza Healthline, "Timatenga tsiku limodzi panthawi." Amayang'anitsitsa thanzi la Aaliyah, komanso thanzi la abale ake. "Ndili othokoza tsiku lililonse lomwe timakhala limodzi," anawonjezera Taylor.