Tekereza, umwana wawe muto arimo aramwenyura, yiruka kandi akina. Uri kureba intambwe yose y'imikurire ye. Iyo utekereje ko ibintu byose bimeze neza, mu buryo butunguranye intambwe ye irahinduka, atangira kugwa kenshi. Kubona ikintu nk'icyo byatera ubwoba umubyeyi cyangwa se uwo ari we wese, sibyo? Ibi bivuga ku miryango mike itigeze itakaza icyizere nubwo yahuye n'ibintu nk'ibi bibabaje. Inkuru zabo zitwigisha byinshi.
Inkuru ya "Will": Umunsi Ibintu Byose Byahindutse
Will ni umwana muto w’umunyagitugu, ukora cyane kandi wisanzura. Nk’uko nyina, Casey abivuga, buri ntambwe yose yateye mu mikurire ye yageze ku gihe. Ubwo Will yari afite imyaka ibiri, yagendaga neza kandi akina neza, ariko nta mpamvu igaragara, yatangiye kugwa kenshi. Umunsi umwe, yaguye mu buryo butunguranye.
Kuva uwo munsi, ubuzima bwa Will bwatangiye kwangirika vuba. Nyuma y'ibizamini byinshi, abaganga basanze Will afite indwara idasanzwe. Iyo ndwara yitwaga 'Leigh syndrome' .
Muri make, buri selile mu mubiri wacu ifite inganda ntoya zitwa mitochondria zitanga ingufu. Muri iyi ndwara idasanzwe yitwa Leigh syndrome, izi centers zitanga ingufu ntizikora neza bitewe n’impinduka mu miterere y’uturemangingo. Will yagize impinduka muri imwe muri izo gene, yitwa SURF1. Iyi ndwara ibarizwa mu itsinda rinini ry’indwara zitwa mitochondria.
Casey yibuka icyo gihe afite amarangamutima menshi. "Byari ibihe bigoye cyane mu buzima bwacu. Nubwo umwe mu bana banjye atashoboraga kugenda, undi mwana wanjye yari arimo kwiga kugenda." Tekereza ukuntu uwo mubyeyi agomba kuba yarumvise ameze.
Intambara irenze ububyeyi
Ubwo ibi byabaga ku mwana wabo, Casey n'umugabo we, Doug, ntibicaye gusa ngo barebe. Batangiye gukora ubushakashatsi ku byo bari bazi byose kuri iyi ndwara. Nk'uko Casey abivuga, "Iyo wumvise indwara idasanzwe nk'iyi, wumva ubuzima bwawe bwose burimo gusenyuka imbere yawe ... hanyuma ugomba kwiga byose biriho kumenya ku ndwara y'umwana wawe. Ni nko kujya mu ishuri ry'ubuganga ugafata amasomo mashya."
Bamaze kubona ko amakuru n'ibikoresho bike kuri iyi ndwara byari bihari, bifatanyije n'indi miryango ifite abana bafite iyo ndwara maze batangiza "Cure Mito Foundation." Intego y'iyi fondasiyo kwari ugufasha kubona umuti cyangwa umuti wa Leigh syndrome.
"Umuryango w'umwana urwaye indwara idakunze kugaragara, usibye kwita ku mwana, turi abavugizi bakomeye kuri bo, turi abaforomo nijoro, dukusanya amamiliyoni y'amadolari. Ntituzi niba ibi bintu bizagenda neza. Ariko, turagerageza." - Casey Wollaben
Reba imbogamizi ababyeyi nk'aba bahura nazo n'uruhare runini bafite.
| Ibibazo ababyeyi b'umwana urwaye indwara idakunze kugaragara bahura na byo | Inshingano zitandukanye bakora |
|---|---|
| Kutagira amakuru nyayo n'ibikoresho by'ibanze ku ndwara. | Umushakashatsi: Kwiga iby'iyi ndwara wenyine. |
| Amafaranga menshi yo kwivuza no gutanga ubufasha. | Gukusanya inkunga: Gushaka amafaranga yo gukora ubushakashatsi. |
| Guhangayika cyane mu byiyumvo no kwigunga. | Umwunganizi: Guharanira uburenganzira n'inyungu z'umwana. |
| Ubuvuzi bwihariye bukenewe amasaha 24 ku munsi. | Umuforomo: Guha umwana ubuvuzi bukenewe mu rugo. |
"Sophia" wahinduye ububabare imbaraga
Inkuru y'umubyeyi witwa Sophia Silber nayo ifitanye isano n'ibi. Ari no mu nama y'ubuyobozi ya `Cure Mito` Foundation. Hashize imyaka itandatu, umukobwa we muto Miriam, nyuma y'ibyumweru bike avutse, yitabye Imana azize `Leigh syndrome`. Ihungabana ry'urwo rupfu rutunguranye kandi rutunguranye ryari rikomeye cyane ku buryo Sophia avuga ko icyo gikorwa cyagabanyije ubuzima bwabo mo ibice bibiri: `mbere` na `nyuma`. Ati: "Buri jambo, buri munota w'icyo gihe uhora mu mitima yacu."
Ariko ntiyagarukiye aho. Yakoresheje ubumenyi bwe bw'umwuga (isesengura ry'amakuru y'ibizamini by'ubuvuzi) kugira ngo akore urutonde rw'abarwayi rwakusanya amakuru yerekeye abarwayi barwaye iyi ndwara hirya no hino ku isi. Yatanze amasaha ibihumbi kuri ibi.
Kuki ububiko bw'abarwayi nk'ubu ari ingenzi?
Tekereza, kubera ko izi ndwara zidakunze kugaragara, nta muganga n'umwe uzahura n'abarwayi benshi nk'aba. Bityo rero amakuru meza ku buryo indwara ikura, uko igenda, n'uko ibimenyetso bihinduka ni abarwayi n'imiryango yabo. Iyo aya makuru akusanyirijwe hamwe, aba isoko y'agaciro ku bashakashatsi bashaka imiti mishya. Bitanga inzira yo kuvura mishya.
Umurage w'ibyiringiro
Reka dusubire ku nkuru ya Will. Uyu munsi, Will afite imyaka 11. Nubwo adashobora kugenda, kuvuga, cyangwa kurya mu kanwa, ubuzima bwe buracyari bwiza. Icy'ingenzi kurushaho, ubushobozi bwe bwo mu mutwe buracyari bwiza cyane. Nyina avuga ko ashishikajwe cyane na siyansi. Mu kiganiro aherutse kugirana na we kuri videwo, yaramwenyuye maze atera igikumwe hejuru kugira ngo abyemeze.
Umuryango Cure Mito Foundation, watangijwe n'ababyeyi ba Will, ubu urimo gutera inkunga ubuvuzi bw'uturemangingo n'ubushakashatsi ku miti kugira ngo harebwe niba indi miti isanzwe ishobora gukoreshwa mu kuvura iyi ndwara.
Ibyo bivuze ko ibyo dukora mu izina rya Will bishobora kurokora ubuzima bw'undi mwana urwaye iyi ndwara mu gihe kizaza. Uwo niwo murage asiga. Izi nkuru zitubwira ko uko ibintu byaba bimeze kose, nidushyira hamwe tugakorana dufite icyizere, dushobora kugira icyo duhindura. Intambara aba babyeyi barwanira umwana wabo ni ugushyiraho ahazaza h'abandi bana ibihumbi.
Ubutumwa bwo kujyana mu rugo
- Gufatwa n'indwara idakunze kugaragara si iherezo ry'ubuzima. Ubumenyi, ubumwe, n'ibyiringiro ni byo mbaraga zawe zikomeye.
- Niba ubonye impinduka zidasanzwe kandi zidasobanutse mu mikurire y'umwana wawe cyangwa imyitwarire ye, ntuzirengagize. Shaka inama kwa muganga wujuje ibisabwa ako kanya.
- Inkunga yacu n'ubwumvikane bwacu ni ingenzi cyane ku miryango ibana n'ibi bibazo. Ntimukabihe akato, ahubwo mube imbaraga zayo.
- Ubunararibonye n'amakuru by'abarwayi n'imiryango yabo ni isoko y'agaciro gakomeye mu bushakashatsi kugira ngo haboneke uburyo bushya bwo kuvura.
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