BBC ivuga ko Maureira yasabye perezida Michelle Bachelet, kwemererwa "gusinzira ubuziraherezo" kuko akimara kuvuka, yanduye indwara ihererekanywa mu muryango yitwa ’cystic fibrosis’ yanduje ibihaha bye, umwijima n’urwagashya.

Kuva ubwo, yabazwe kenshi, apima ibiro 35 kandi avuga ko "ananiwe no gukomeza kurwana".

Mu butumwa bwe, uyu mwangavu avuga ko ashaka kuvugana na madamu Bachelet "byihutirwa".

Muri mashusho agira ati: "Perezida ashobora kunyemerera guterwa urushinge ruzansinziriza burundu".

Amategeko yo mu gihugu cya Chile ntiyemera guhuhura abarwayi batazakira, kuko bifatwa nk’ubwiyahuzi bufashijwemo na muganga.

Mu kiganiro yagiranye n’ishami rya BBC Mundo kuri telefoni, Valentina Maureira yavuze ko ubuzima bwe ari intambara ihoraho kuri we n’umuryango we.

Yagize ati "Ndambiwe no gukomeza kurwara kubera ko nta gihinduka. Birananiza cyane."

Mu butumwa yatanze, uyu mukobwa avuga ko musaza we mukuru, Michael, yapfuye azize iyi ndwara igihe yari afite imyaka itandatu.

Mu gihe gito gishize, inshuti ye bari bahuriye mu bitaro mu murwa mukuru Santiago, nayo yarapfuye.

Ati "Yari imwe mu nshuti zanjye magara. Kumubona akora uko ashoboye, ariko agakomeza kubabara akanapfa byankozeho."

Indwara ya “Cystic Fibrosis” ni yo yica kurusha izindi ndwara zose zivukanwa mu bazungu. Iterwa n’utugirangingo (gene) twangiritse bituma ibihaha bisohora amatembabuzi akomeye kurusha uburyo busanzwe, bishobora gutera mikorobe mu myanya y’ubuhumekero ndetse bigatera ubwandu.

Ibimenyetso biboneka cyane ni inkorora ihoraho, kubura umwuka cyangwa guhumeka bigoye no kwandura mu gatuza.

Amatembabuzi afashe azibira andi afasha igogora aturuka mu rwagashya, bisobanuye ko ibiryo bidashobora kugogorwa neza cyangwa kumirwa ku buryo buboneye.

Ibi bishobora gutera imirire mibi ituma habaho kudakura neza no kubura ibiro, mu nda hameze nabi no kuhababara, gutumba n’impiswi ihoraho.

Se wa Valentine, Fredy Maureira, avuga ko umuhungu w’imfura ye yapfuye mu 1996 amaze imyaka ine mu bitaro.

Yagize ati:"Yakiriwe mu bitaro afite imyaka ibiri kandi yapimaga hagati y’ibiro bibiri cyangwa bitatu."

Umukobwa we wa kabiri nawe afite utwo turemangingo ariko ameze neza. Cyakora Valentina yapimwe iyi ndwara afite amezi atandatu. Umuryango w’uyu mukobwa wizera ko uzabona abagiraneza bazatanga ingingo eshatu ayeneye: ibihaha, umwijima n’urwagashya.

Muri 2009, ubwo Madonna yazengurukaga Chile, Fredy Maureira yatakambiye icyi cyamamare kujyana Valentina muri Amerika kugira ngo abone izo ngingo.

Madonna ntiyigeze asubiza ariko abategetsi n’ibyamamare muri Chile bishyize hamwe. Bananiwe kubona amadolari 650,000 acyenewe kuri ubwo buvuzi.

Ariko n’ubwo uyu muryango waba ufite amafaranga akenewe n’ingingo zihuye n’iz’umwana, hari izindi mbogamizi: Valentina ari munsi y’imyaka 15 kandi apima ibiro biri munsi y’ibicyenewe kugira ngo abagwe.

Se, Fredy maureira yavuze ko umukobwa we yamubwiye ati "Dawe, sinshaka kubikora ukundi, ndarambiwe." "kubera ko no kubagwa nta kizere bitanga. "Ubu se mpfuye hagati mu gikorwa mbagwa?"

Maureira avuga ko we n’umugore we urwaje Valentina mu bitaro bumijwe n’ubutumwa bwa videwo y’umwana wabo. Ariko bavuga ko bazashyigikira icyo Valentina azahitamo cyose.

Kugeza ubu, perezida Bachelet ntaragira icyo avuga ku busabe bwa Valentina, ariko ibiro bye bishinzwe itangazamakuru byabwiye BBC ko hazatangwa igisubizo.

Umuryango ufasha ukora kuri Cystic Fibrosis mu Bwongereza, uvuga ko iyi ndwara ifite abantu bagera ku 1.000.000 ku isi hose.

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