Almaty. Fabrairu 22. Kaztag - Mada Alimkhanava. A cikin yankin Yammacin Kazakhstan, iyayen Emir Shakhmaro sun sha daga Atrophy Spinal (SMA) suna kokarin fito da sama da dala miliyan 2.3 don ceton rayuwarsa.
"Wannan cuta baya jira, baya da kyale. Yana ci gaba, ɗaukar babbar hanyar dubu 1 a Sarki kowace rana. Ba za mu iya tambayar wata cuta ta tsaya ba, wahala kuma ba mu lokaci don tattara kuɗi don magani. Abin takaici, ba shi yiwuwa sasantawa ba tare da Zolgensma ba. Bayan haka, Zolgensma na iya dakatar da ci gaban cutar da kuma hana ta tasiri kananan kwayoyin halittar Eminios. Kowace rana nakan yi barci tare da tunanin cewa gobe zamu rufe tattarawa kuma za mu tattara da Sarkinmu, zai iya jin mu da nasarorin, in ji Mama Mahaifin Tabina Sabina akan hanyar sadarwar zamantakewa.
Baya ga gwagwarmaya don adana rayuwar dansa, iyayen sarki suna kokarin adana rayuwar da kuma sauran yara suna wahala daga Sma da kuma tabbatar da cewa an bi da su a Kazakhstan kyauta.
"Baya ga tattara kan Zolgensma, muna kokarin yin gwagwarmaya domin tabbatar da cewa yara masu irin wannan cuta suka fara a Kazakhstan. Bayan haka, Sarkin ba shine kawai ɗa tare da SMA da, rashin alheri, ba na ƙarshe ba. Muna fama da ba zai yiwu ba, amma na rayuwar yaranmu. Bayan haka, masu kaifin mutane sun riga sun ƙirƙira shirye-shirye uku don lura da sm. Yara sune makomar Kazakhstan, amma saboda wasu dalilai Kazakhstan ya hana yara nan gaba, la'anta su har zuwa mutuwa. Kuma koyaushe, ba mutanen da ke cikin damuwa suna ƙoƙarin magance matsalar da ta rubuta ba, "in ji Sabina ta rubuta.
Ajiye Yelgensma guda kawai ana buƙata, amma farashin dala miliyan 2.3, kuma ya zama dole a sanya shi kafin yaron zai yi shekara biyu. Yanzu sarki shekara daya da tara.
A cewar Sabina, daliban jihar ba su amsa matsalarsu ba
"Gudanar da lafiya na yankin sun ce sun shigar da wani aikace-aikacen don fito da shawarar da yanke shawara a kan wannan yaron. Don haka babu wanda ya kira ni, ba ya ba da wani abu, ba wanda ya amsa haruffa. Duk da yake mun tattara kuɗi kanmu, "Kaztag ya ruwaito ranar Litinin by Sabina.
Kaztag ya yi kira ga ma'aikatar da 'yan jaridu na ma'aikatar kiwon lafiyar Kazakhstan tare da batun abin da ake yi domin ceton rayuwar Emir Shakhmarov da kuma warware matsalar tare da lura da irin wadannan yara.
Kuna iya taimaka wa sarki ta hanyar aika kowane adadin zuwa cikakkun bayanai:
Bank Bank Ojsc
Lambar Taswira: 5169 4971 4460 6583
8 771 483 75 Sabina syngalia D. (mama sarai)
OJSC SBERBANK KAZAKHSAN
Lambar Taswira: 4263 4333 3483 6340
8 771 483 75 Sabina syngalizena D.
OJS BANKE CETRECREDITI
Lambar Taswira: 4899 9333 3357
Ojsc Halyk Bank.
Lambar Map: 4405 6397 1084 2392
8 705 328 06 Checkers Tale Taleh I. (Baba Mai Kyau)
Don Rasha:
Sberbank 4276 4600 1801 5623
8 987 783 63 40 Eena Sergeevna k. (babban aboki na dangi)
PayPal @ Helpemir.