Yara Suna Rayuwa Tare da MS, ma: Labarin Iyali Daya

Wadatacce

• Tafiya zuwa ganewar asali
• Fara magani
• Nasiha ga sauran iyalai
• Neman tallafi a cikin ƙungiyar MS
• Ana neman hanyoyin da za a ƙara nishaɗi
• Yin zaɓin rayuwa mai kyau a matsayin iyali
• Kasancewa kungiya da mannewa tare
• Takeaway

A cikin ɗakin gidan Valdez akwai tebur da aka ɗora a sama tare da kwantena na abubuwa masu ƙwan zuma. Yin wannan "slime" shine sha'awar Aaliyah ɗan shekara 7. Tana yin sabon tsari a kowace rana, tana ƙara kyalkyali da gwada launuka daban-daban.

"Yana da kamar putty amma yana shimfidawa," in ji Aaliyah.

Goo ya samu ko'ina kuma ya kori mahaifin Aaliyah, Taylor, ɗan mahaukaci. Iyalin sun ƙare daga kwantena na Tupperware: duk suna cike da slime. Amma ba zai ce mata ta daina ba. Yana tunanin aikin zai iya zama warkewa saboda yana sa Aaliyah ta mai da hankali da wasa da hannunta.

A shekara 6, Aaliyah ya kamu da cutar sclerosis (MS). Yanzu, iyayenta, Carmen da Taylor, suna yin duk abin da za su iya don tabbatar da Aaliyah ta kasance cikin ƙoshin lafiya kuma ta kasance cikin farin ciki, ƙuruciya mai aiki. Wannan ya haɗa da fitar da Aaliyah don ayyukan nishaɗi bayan jinyar MS ɗinta da kuma barin sana'arta ta ɓarke.

MS yanayin ne wanda yawanci ba ya haɗuwa da yara. Yawancin mutanen da ke zaune tare da MS ana bincikar su tsakanin shekarun 20 zuwa 50, a cewar MSungiyar MS ta .asa. Amma MS yana shafar yara fiye da yadda kuke tsammani. A zahiri, Cleveland Clinic ya lura cewa MS na ƙuruciya na iya wakiltar kusan kashi 10 cikin 100 na duk shari'o'in.

“Lokacin da aka ce min tana da cutar MS sai na kadu. Na kasance kamar, ‘A’a, yara ba sa samun MS.’ Ya kasance da wuya ƙwarai, ”in ji Carmen ga Healthline.

Wannan shine dalilin da ya sa Carmen ta ƙirƙiri Instagram don Aaliyah don haɓaka wayar da kan jama'a game da ƙuruciya ta MS. A kan asusun, tana ba da labarai game da alamomin Aaliyah, jiyya, da rayuwar yau da kullun.

"Na kasance ni kadai a wannan shekarar ina tunanin ni kadai ce a duniya da ke da 'ya mace wannan matashi mai cutar MS," in ji ta. "Idan zan iya taimaka wa wasu iyayen, wasu uwaye, na fi farin ciki da hakan."

Shekarar da aka gano Aaliyah ta kasance mai wahala ga Aaliyah da iyalinta. Suna raba labarinsu don yada wayar da kan jama'a game da hakikanin MS yara.

Tafiya zuwa ganewar asali

Alamar farko ta Aaliyah shine jiri, amma karin alamun sun bayyana akan lokaci. Iyayenta sun lura cewa kamar tana girgiza lokacin da suka tashe ta da safe. Bayan haka, wata rana a wurin shakatawar, Aaliyah ta faɗi. Carmen ta ga tana jan ƙafarta ta dama. Sun tafi don ganawa da likita kuma likita ya ba da shawarar Aaliyah na iya samun ƙananan rauni.

Aaliyah ta daina jan kafa, amma tsawon watanni biyu, wasu alamun sun bayyana. Ta fara tuntube kan matakala. Carmen ta lura cewa hannayen Aaliyah sun girgiza kuma tana da wahalar rubutu. Wani malami ya bayyana lokacin da Aaliyah ta bayyana a rikice, kamar ba ta san inda take ba. A wannan rana, iyayenta suka kai ta wurin likitan yara.

Likitan Aaliyah ya ba da shawarar gwajin jijiyoyin jiki - amma zai ɗauki kusan mako guda don samun alƙawari. Carmen da Taylor sun amince, amma sun ce idan alamun sun ci gaba da tsananta, za su tafi kai tsaye zuwa asibiti.

A wannan satin, Aaliyah ta fara rasa mizani da faduwa, kuma tana korafin ciwon kai. Taylor ya ce "A hankalce, ba ita ba ce kanta." Sun dauke ta zuwa ga ER.

A asibiti, likitoci sun bada umarnin yin gwaji yayin da alamomin Aaliyah suka kara ta’azzara. Dukkanin gwaje-gwajen ta sun zama na al'ada, har sai da suka yi cikakken hoton MRI na kwakwalwar ta wanda ya bayyana raunuka. Wani masanin ilimin jijiyoyi ya gaya musu cewa mai yiwuwa Aaliyah yana da cutar ta MS.

"Mun rasa nutsuwa," in ji Taylor. “Ya kasance ji kamar jana'iza. Dukan dangin sun zo. Ranar ce kawai mafi munin rayuwa. ”

Bayan sun kawo Aaliyah gida daga asibiti, Taylor ya ce sun ji batattu. Carmen ta kwashe awowi tana neman bayanai a intanet. "Mun kasance cikin damuwa nan da nan," in ji Taylor ga Healthline. “Mun kasance sabo ga wannan. Ba mu da sani. ”

Bayan watanni biyu, bayan wani binciken na MRI, an tabbatar da ganewar cutar Aaliyah na MS kuma an tura ta ga Dakta Gregory Aaen, kwararre a Cibiyar Kiwon Lafiya ta Jami'ar Loma Linda. Ya yi magana da dangin game da abin da suke so, kuma ya ba su ƙasidu game da magungunan da ake da su.

Dokta Aaen ya ba da shawarar cewa Aaliyah ta fara jinya nan take don rage saurin cutar. Amma kuma ya gaya musu cewa za su iya jira. Zai yiwu Aaliyah na iya daukar dogon lokaci ba tare da wani hari ba.

Iyalin sun yanke shawarar jira. Hanyoyin da za a iya haifar da mummunan sakamako sun zama kamar ƙarfi ga wani saurayi kamar Aaliyah.

Carmen sunyi bincike game da ƙarin hanyoyin kwantar da hankali waɗanda zasu iya taimakawa. Tsawon watanni, Aaliyah kamar tana cikin koshin lafiya. "Muna da bege," in ji Taylor.

Fara magani

Kimanin watanni takwas bayan haka, Aaliyah ya koka game da “ganin abu biyu,” kuma dangin sun koma asibiti. An gano ta da cutar neuritis, wata alama ce ta MS inda jijiyar ido ta zama kumburi. Wani hoton kwakwalwa ya nuna sabbin raunuka.

Dr. Aaen ya bukaci dangin su fara Aaliyah kan magani. Taylor ya tuno da kyakkyawan fata na likitan cewa Aaliyah za ta sami tsawon rai kuma ta kasance daidai, muddin suka fara yaki da cutar. "Mun ɗauki ƙarfinsa kuma muka ce, 'Yayi, muna buƙatar yin wannan.'"

Likitan ya ba da shawarar wani magani da ke bukatar Aaliyah ta sami jakar awanni bakwai sau daya a mako har tsawon sati hudu. Kafin jinyar farko, ma'aikatan jinya sun baiwa Carmen da Taylor tayin fa'idar kasada da illoli.

Taylor ya ce "Abin bakin ciki ne kawai saboda illa ko abubuwan da ka iya faruwa," "Mun kasance cikin hawaye, mu biyu."

Taylor ya ce Aaliyah ta yi kuka a wasu lokuta yayin jinyar, amma Aaliyah ba ta tuna bacin rai ba. Ta tuna cewa a lokuta daban-daban tana son mahaifinta, ko mahaifiyarsa, ko 'yar'uwarta su riƙe hannunta - kuma sun yi hakan. Ta kuma tuna cewa ta samu yin wasan gida kuma ta hau keken hawa a cikin ɗakin jira.

Fiye da wata ɗaya daga baya, Aaliyah tana cikin koshin lafiya. "Tana da matukar aiki," in ji Taylor ga Healthline. Da safe, har yanzu yana lura da rashin kunya, amma ya kara da cewa "a cikin yini, tana yin kyau."

Nasiha ga sauran iyalai

Ta hanyar lokutan kalubale tun lokacin da Aaliyah ta gano cutar, dangin Valdez sun sami hanyoyin da za su kasance da ƙarfi. "Mun bambanta, mun fi kusa," in ji Carmen ga Healthline. Ga dangi da ke fuskantar cutar ta MS, Carmen da Taylor suna fatan kwarewar su da shawarwarin su na taimakawa.

Neman tallafi a cikin ƙungiyar MS

Tun lokacin da yara na MS ba su da yawa, Carmen ya gaya wa Healthline cewa da wuya ya fara samun tallafi. Amma shiga cikin fannonin MS da yawa ya taimaka. Ba da daɗewa ba, dangi suka halarci Walk MS: Mafi Girma Los Angeles.

“Mutane da yawa sun kasance tare da kyawawan motsa jiki. Thearfin, yanayin duka ya yi kyau, ”in ji Carmen. "Dukkanmu mun ji daɗin hakan a matsayinmu na dangi."

Haka kuma kafofin sada zumunta sun zama tushen tallafi. Ta hanyar Instagram, Carmen ya haɗu da wasu iyayen waɗanda ke da yara ƙanana da MS. Suna raba bayanai game da jiyya da yadda yaransu ke ciki.

Ana neman hanyoyin da za a ƙara nishaɗi

Lokacin da Aaliyah ke da alƙawari don gwaje-gwaje ko jiyya, iyayenta suna neman hanyar da za su ƙara daɗi a ranar. Suna iya fita cin abinci ko barin ta zaɓi sabon abin wasa. "A koyaushe muna ƙoƙari mu sanya ta abin dariya gare ta," in ji Carmen.

Don ƙara nishaɗi da amfani, Taylor ta sayi keken hawa wanda Aaliyah da ɗan uwanta ɗan shekara huɗu za su iya hawa tare. Ya siya shi da Walk: MS a hankali, idan Aaliyah ta gaji ko ta dimauce, amma yana tunanin zasu yi amfani da shi don wasu fitarwa. Ya sanya shi da inuwa don kare yara daga rana.

Hakanan Aaliyah tana da sabon biri mai cike da kayan kwalliya wanda ta karɓa daga Mr. Providesungiyar ta ba da "birai na MS," wanda aka fi sani da ƙawayen Oscar, ga kowane yaro tare da MS wanda ya buƙaci ɗayan. Aaliyah ta saka mata biri biri Hannah. Tana son yin rawa da ita da kuma ciyar da tuffa, abincin da Hannah ta fi so.

Yin zaɓin rayuwa mai kyau a matsayin iyali

Kodayake babu takamaiman abinci ga MS, cin abinci mai kyau da rayuwa mai kyau na rayuwa na iya zama mai taimako ga duk wanda ke da cuta mai tsanani - har da yara.

Ga dangin Valdez, wannan yana nufin guje wa abinci mai sauri da ƙara abubuwan gina jiki a cikin abinci. "Ina da yara shida kuma dukkansu suna da kyau, don haka ina da wata irin kayan lambu a ciki," in ji Carmen. Tana ƙoƙari ta gauraya kayan lambu kamar alayyafo a cikin abinci, da ƙara kayan ƙanshi kamar ginger da turmeric. Sun kuma fara cin quinoa maimakon shinkafa.

Kasancewa kungiya da mannewa tare

Taylor da Carmen sun lura cewa suna da karfi daban-daban idan ya shafi kula da yanayin Aaliyah. Dukansu sun kasance tare da Aaliyah a asibiti da kuma lokacin alƙawarin likita, amma Taylor sau da yawa mahaifi ne a gefenta yayin gwaje-gwaje masu wahala. Misali, yana yi mata ta'aziyya idan ta ji tsoro a gaban MRIs. Carmen, a gefe guda, ya fi shiga cikin binciken MS, sadarwa tare da sauran iyalai, da wayar da kan jama'a game da yanayin. "Mun taimaka wa juna sosai a wannan yakin," in ji Taylor.

Yanayin Aaliyah kuma ya kawo wasu canje-canje ga heran uwanta. Dama bayan ganowarta, Taylor ta bukace su da su kara mata kyau kuma suyi haƙuri da ita. Daga baya, kwararru sun shawarci ’yan uwan ​​da su kula da Aaliyah kamar yadda suka saba, don kar ta girma ta wuce gona da iri. Iyalin har yanzu suna bincika canje-canje, amma Carmen ta ce gabaɗaya, yaransu suna faɗa ƙasa da na da. Taylor ya kara da cewa, "Kowa ya yi ma'amala da shi daban, amma duk muna tare da ita."

Takeaway

"Ina so kawai duniya ta san cewa yaran wannan ƙaramin yaran suna samun MS," in ji Carmen ga Healthline. Ofaya daga cikin ƙalubalen da dangin suka fuskanta a wannan shekara shine jin saniyar ware wanda ya zo tare da ganewar Aaliyah. Amma haɗuwa da babbar ƙungiyar MS ya kawo canji. Carmen ta ce halartar Walk: MS ta taimaka wa dangin su daina jin kadaici. Ta kara da cewa "Ka ga mutane da yawa wadanda ke yaki irin naka, don haka ka kara karfi," in ji ta. "Kun ga duk kudaden da suke tarawa, don haka da fatan wata rana za a samu waraka."

A yanzu, Taylor ya fada wa Healthline, "Muna daukar wata rana a lokaci guda." Suna mai da hankali sosai kan lafiyar Aaliyah, da lafiyar heran uwanta. Taylor ya kara da cewa: "Ina godiya ga kowace rana da muke tare."