Jaririn Pennsylvania Wanda Ya Ƙarfafa Dokar Nuna Jarirai Ya Mutu
Jaririn Pennsylvania Wanda Ya Ƙarfafa Dokar Nuna Jarirai Ya Mutu
Anonim

Hannah Ginion, yarinyar da aka gano tare da cutar Krabbe da ba kasafai ba, ya sa likitoci su gabatar da ingantattun gwaje-gwajen jarirai da kuma haifar da ƙirƙirar "Dokar Hannah" ta mutu. Tana da shekara 1 da wata 11.

Yarinyar da ta fito daga garin Bristol a gundumar Bucks, Pa., ta mutu "lafiya" a ranar 28 ga Disamba, ta rubuta wa danginta a shafin Facebook, Hope for Hannah. “An kira Hannah gida don ta kasance tare da Mala’iku a safiyar yau. Ta tafi lafiya.”

Hannah, watanni bayan haihuwarta a cikin Janairu 2013, an gano ta da cutar Krabbe, wanda aka fi sani da globoid cell leukodystrophy, cuta da aka gada a cikinta wanda tsarin juyayi ba shi da wani enzyme mai suna galactosylceramidase, wanda ya zama dole don girma da amfani da myelin, a rufin da ke kare takamaiman ƙwayoyin jijiya waɗanda ke ba da izinin saurin yaɗuwar sha'awar jijiya, bisa ga Bayanan Gida na Genetics.

Cutar tana shafar daya cikin mutane 100,000 a Amurka ba tare da magani ba. Cutar dai na faruwa ne a jariran da ke kasa da shekara 1, inda da yawa ke mutuwa daga gare ta kafin ko kuma su kai shekara 2, ko da yake tun da wuri, wanda ya hada da dashen jini daga igiyar cibiya, na iya taimakawa wajen magance cutar.

Iyalin Hannatu ba su san cewa gwajin da aka yi a lokacin haihuwa zai iya gano cutar kuma ya ba su damar neman magani a lokacin.

"Sun ce ya makara a gare ta. Alamun sun riga sun ci gaba," mahaifiyar Hannah, Vicki ta gaya wa Fox-affiliate, My Fox Philly.

Daga nan ne Giion suka fara shafin Hope ga Hannah Facebook a kokarin yada cutar ta Krabbe. Shafin ya kawo su sama da mutane 24,000 wadanda suka fara bin labarinta ta yanar gizo tare da kwadaitar da likitoci da jami'ai a jihohi daban-daban don yin tambayoyi da inganta gwaje-gwajen tantance jarirai.

Gwamnan Pennsylvania Tom Corbett ya rattaba hannu kan "Dokar Hannah" a watan Oktoba 2014, yana faɗaɗa gwajin haihuwa ga jarirai don taimakawa inganta gano cutar Krabbe da sauran cututtuka masu lalacewa.

"Abin alfahari ne a sanya hannu kan wannan lissafin, wanda zai taimaka wajen ingantawa da fatan ceton rayukan wasu daga cikin mafi yawan jama'ar Pennsylvania - yaranmu," Corbett ya gaya wa Levittownnow.com a watan Oktoba.

A daren Lahadi ne aka gudanar da bikin haskaka kyandir don girmama Hannah a wajen makarantar firamare ta John Fitch da ke Levittown.

Shahararren taken