Uko agahinda ko kurwaza umwana katumye atangiza ikigo cyita ku bafite ’maladie rare’

Yanditswe na Mukahirwa Diane
Kuya 28 Gashyantare 2021 saa 09:08
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Mu mwaka wa 2004 nibwo umuryango wa Ndamukunze Manzi, warwaje umwana wabo w’imfura, afatwa n’uburwayi bukomeye biba ngombwa ko ajya kuvurirwa mu gihugu cy’u Buhinde.

Uyu mwana yagejejweyo basanga afite bumwe mu burwayi bwibasira abantu bake ku Isi (maladie rare) buzwi nka ‘William syndrome’, bisaba ko abagwa umutima inshuro ebyiri kugira ngo ubuzima bubashe kwicuma.

Uyu mwana w’umuhungu ibi yarabikuranye igihe kiragera cyo kujya ku ishuri ababyeyi bakora inshingano zabo zo kumugezayo, ariko kubera ingaruka z’ubwo burwayi ntiyabashije gukurikira neza nk’abandi bana.

Nyuma yo kubona ko ku ishuri ntacyo bamufasha, ababyeyi be bahisemo kumushakira umwarimu uzajya amwigisha ku buryo bw’umwihariko bujyanye n’uburwayi bwe.

Ubu buryo bwaje gutanga umusaruro kuko yabashije kumenya gusoma no kwandika, kwikorera imirimo y’ibanze ndetse ubu akaba ageze ku rwego rwo guhabwa amasomo ku bumenyi ngiro nko kwiga mudasobwa,gusana ibintu,ubugeni n’ibindi.

Iyi ntabwe ababyeyi be yarabashimishije bituma se yifuza gufasha abana barwaye izo ndwara kuba babona uburyo bitabwaho hakabasha kumenywa icyo umwana ashobora gukora.

Ubundi indwara zibasira abantu bake ziravukanwa zikaba zagufata mu buryo butandukanye, bituma uzirwaye ataba ameze nk’abandi, akaba akeneye kwitabwaho mu buryo bw’umwihariko.

Hari ubwoko butandukanye bwazo burimo nka ‘William syndrome’, ‘Achalasia’, ‘Trisomy 21’, ‘Autism’, n’izindi nyinshi zifata mu buryo butandukanye.

Imibare y’Umuryango w’Abibumbye wita ku Buzima OMS, yagaragaje ko Ku Isi yose hari abantu miliyoni 300 barwaye izi ndwara.

Kuba izi ndwara zitamenyerewe bituma abazifite bahura n’ibibazo bitandukanye birimo kubura ubuvuzi nyabwo, kutagira uburyo bwo kwitabwaho mu myigire yihariye no mu buzima busanzwe.

Abahanga mu by’ubuzima berekana ko nubwo abo bantu baba bafite ibibazo hari ibyo baba bashoboye bisaba ko bitabwaho byihariye, ariko mu Rwanda haracyari ikibazo cy’uko abafite ubu burwayi badafashwa uko bikwiye kuko butamenyerewe.

Byamuteye inyota yo gufasha abandi

Manzi n’umugore we Uwimbabazi, bari bamaze kwita ku mwana wabo bakabona hari icyo agezeho byatumye bagira inyota yo kuba bafasha n’abandi bana barwaye izi ndwara ariko batabasha kwitabwaho nk’uko bikwiye.

Mu kiganiro Manzi yagiranye na IGIHE yavuze ko yagerageje kujyana umwana we mu ishuri risanzwe gusa ku bw’imiterere y’ubuzima bwe byaragoranye kuko ritari rifite uburyo bwihariye bwo kumufasha.

Yagize ati “Umwana wacu yahuye n’ubu burwayi akiri muto agera igihe cyo kwiga yajya mu ishuri ntagendane n’abandi uko bikwiye, biza kugeraho abandi bajya mu mashuri yisumbuye kandi we ntiyari kujyayo.”

Yakomeje avuga ko nyuma yo kubona ko umwana we atabasha kugendana n’abandi yahisemo kumushakira umwarimu umwitaho, akaba yamufasha kumenya ibintu by’ibanze.

Ati “Yajyaga mu ishuri nk’abandi ariko ntabashe gukurikira neza ngo agendane nabo kubera ubwo burwayi. Nyuma naje kumushakira umwarimu umwigisha muburyo bwumwihariko, biza gutanga umusaruro ko yamenye gusoma no kwandika n’ubundi bumenyi bw’ibanze.”

Nyuma yo kubona umwana ufite uburwayi bwibasira abantu bake ku Isi ashobora kwitabwaho by’umwihariko akagira aho agera byatumye agira igitekerezo cyo gushinga Ikigo,Centre Alliance, kizajya gifasha abana bafite ubu burwayi.

Manzi yavuze ko bashinze ikigo mu rwego rwo gufasha abana bafite uburwayi bwibasira abantu bake ku Isi kugira ubumenyi no gufasha imiryango ifite aba bana.

Yagize ati “Iki kigo nagifunguye ngo kijye gifasha abana kugira ubumenyi bw’ibanze burimo gusoma no kwandika ndetse no kumenya kwikorera imirimo y’ibanze, ikindi kizajya gifasha abana ni ukubegereza abandi kugira ngo babashe kwisanga muri sosiyete.”

“Ikindi kizafasha ni ukuganiriza ababyeyi mu kubafasha kwiyakira kuko hari abatabyumva ko umwana yahura n’ibibazo kandi hazajya hanatangwa inyigisho zitandukanye ku bijyanye n’uburwayi bwibasira abantu bake ku Isi bizajya bibafasha kwita ku babana babo.”

Yakomeje asaba ababyeyi bafite aba bana ko bakwihutira kubageza muri iki kigo kugira ngo bakurikiranwe bizabafashe kwisanga muri sosiyete.

Ati “Hari ababyeyi babona umwana afite uburwayi bwibasira abantu bake ku isi (maladie rare) bakamuhisha mu nzu bavuga ko ntacyo azamara, nyamara hari icyo ashoboye. Igikenewe ni ukumwitaho ukakimuvumburamo.”

Isi n’u Rwanda byijihije Umunsi Mpuzamahanga wahariwe kwita ku Ndwara zidasanzwe uba buri wa 28 Gashyantare. U Rwanda rwawizihije ku nshuro ya kabiri mu nsanganyamatsiko igira iti “Njyenyine ntacyo nageraho ariko twese twabishobora.”

Abana bazajya bahabwa amasomo ajyanye n'ubugeni mu kuvumbura impano bifitemo
Abana bazajya bigishirizwa mu mashuri yabugenewe atuma bisanzura
Abana bazajya bigishwa n'abarimu babo mu buryo bwihariye
Centre Alliance iherereye mu Kiyovu hafi ya La Gardienne
Centre Alliance izajya ifasha abana barwaye indwara zibasira abantu bake ku Isi ndetse n'imiryango yabo
Hari imbuga yisanzuye abana bazajya bakiniramo bakisanzura nk'abandi

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