Kubana hamwe no gusuzuma "imitsi ya atrophy" rimwe na rimwe ntibishoboka. Alexandere Moisenya wo muri Zhabaninka yagize amahirwe: Yari afite imyaka 32, kandi arashobora kurya atinze kandi ahumeka. Ubusanzwe, muri Biyelorusiya, ubufasha bwingenzi bugamije gufata abana, abarwayi mu gukura kwibutsa bike cyane, haba indwara za oncology cyangwa indwara. Noneho, ukekeje igihe na siyanse, abaturage badatitayeho bategura amafaranga kandi bagerageza kwerekana ko ubuzima bwabantu bujyanye na miliyoni 2 z'amadora miliyoni - iki nigiciro cyumuti kubantu na SM. Muri mirongo itandatu, Alexandre na we yari umwana ufite atrophy yimitsi, ariko icyo gihe indwara yafatwaga nkimbaraga. Belorus yibuka uburyo abaganga baturutse ibyiringiro babwiye ababyeyi be bati: "Bidatinze". Ariko umusore akomeje kubaho, yigire kurisha andi andi ashakisha umwanya we mubantu bazima.
Likbez ngufi
Imitsi yimitsi ya ATrophy (SMA) - Indwara ya genetique, iganisha ku mitsi intege nke. Smya atanga ubusa cyangwa inenge ya poroteyine iremeza ko asohoza moto neurons (preteine ya SMN). Indwara irashobora kwigaragaza mumyaka itandukanye, kandi buri gihe hafi igenda itera imbere. Ubwa mbere, abarwayi bumva bafite intege nke mumitsi yamaguru, imitsi yumubiri wose iragabanuka buhoro buhoro - kugeza igihe abashinzwe kumira no guhumeka. Ni ngombwa kumva ko ubwenge bwabantu bafite CMA bukomeje gukizwa rwose.
Hariho ubwoko butanu bwa SMA - kuva 0 kugeza iv. Umwanya uterwa nigihe cyo kwigaragaza indwara n'uburemere bwibimenyetso: Mbere yo kwigaragaza bitangira kandi ibimenyetso bivugwa, uruhu rukaze.
Ifoto: Twese hamwe.
Ubwoko bukomeye ni 0 na I.ER EN EREGREST ubwayo, nk'ubutegetsi, mu cyumweru cya 30 cyo gutwita: kugenda k'umwana byagabanutse. Akenshi abana nkabo bapfa mbere, mugihe cyo kuvuka. Ibimenyetso byubwoko bwa SMA ndagaragara mubihe bizonge, kandi indwara igenda itera vuba. Mubisanzwe abo bana ntibabaho kugeza kumyaka 2. Ubwoko bwa SMI II bugaragarira mumwaka wa mbere cyangwa bwa mbere bwubuzima: Abana nkabo barashobora kwicara, ariko kugenda - ntibikiriho. Ibimenyetso bya Royii Ubwoko bwa SMII II irashobora kwigaragaza mubana cyangwa mubyangavu, abantu bafite ubwoko barashobora kwicara ndetse bakajyana gato. Ubwoko bwa smi IV bumaze kugaragara gukura, nk'ubutegetsi, abantu barengeje imyaka 35. Imitsi yabo iracika intege buhoro, kandi buhoro buhoro umuntu atakaza amahirwe yo kugenda.
Abarwayi bafite ubwoko bwa II na III barashobora kubaho nkibisanzwe, ariko bafite ubuhumekero nibindi mugihe runaka.
Noneho mu gihugu byibuze abana 86 na 41 bakuze muburyo butandukanye - abantu 127 gusa. Ariko barashobora kurushaho: igitabo cyabarwayi bafite indwara zo kuzungura nereritary zikorwa umwaka gusa. Byongeye kandi, byemejwe ko gusenyuka kwa gene ari nko kuri 1 kuri 6 imsbons.
Umubare munini ugereranyije no kuvura abana bafite amatongo yimitsi: abantu bumva abana kandi bakusanya amafaranga kugirango bavure. Abantu bakuru ntibagomba no kubara ubufasha nkubwo.
Nk'uko ishyirahamwe rya rusange "ari", amoko ", dufite abantu 41 mu gihugu cyacu dufite indwara nk'izo. Nk'ubutegetsi, bafite ubwoko bwa II-II-iii, akenshi iv. Muri ibi bihe, indwara igenda itinze, ariko finale kuri bose ni kimwe - igikoresho cyuhuhaga ibihaha no kubaho ubuzima mubibabi byerekeranye nubushakashatsi bwabitswe.
"Mu bigo bya Moscou, bamfashe nk'imurikagurisha"
Intwari yacu Alexandre ni urwaye ubwoko bwa sm. Umugabo yavukiye muri Z ALHAnka hashize imyaka 32. Nyina yahise abwira ko Alexandre yavukiye mu mwana uzima rwose, yari aremereye kandi atera imbere kuruta urungano: yize yize guhagarara ku birenge maze yicara. Mu gice cya kimwe cya kabiri, yatangiye kugenda mu gufunga, ahindukirira ikirenge ku kuguru. Abaganga bavuze ko umuhungu ari umunebwe gusa, hanyuma - ko afite ibirenge, nyuma - yagize uruhare rutari rwo mu gitereko. Nyuma yo gusurwa kwa Porofeseri, gukeka SMA byagaragaye.
- Noneho ntibyakirwa kandi byize bike. Mu myaka ya mbere, Mane bane bantwaye ku baganga mu yindi mijyi n'ibihugu, ku bya nyuma bizeraga ko ashobora kumpa. Hanyuma yibuka ko mu bigo bimwe na Moscou bafatwaga nk'imurikagurisha: bayoboye abanyeshuri, basabye kwerekana ururimi ndetse no kuvura cyangwa gusubiza mu buzima busanzwe. Nibyo, bise kwisuzumisha, ariko ibintu byose byagabanutse kubera ko "azapfa vuba." Kimwe na kimwe mbere yishuri. Umugabo agira ati: "Ababyeyi bavuze ko abana nkabo babaho imyaka 16-20.
Nubwo bimeze bityo, hashize imyaka 12, Alegizandere yambutse ibyateganijwe ntarengwa. Yibutse icyo gihe gishobora kuzunguruka mu buriri no kugenzura amaboko ya mashini. Noneho afite amahirwe nkaya. Mwijoro, hari terefone iruhande rwe, kandi ababyeyi baza guhamagarwa guhindura umuhungu wabo. Abakinnyi ni amashanyarazi gusa. Igihe kirenze, ibintu byose byabaye bibi.
Bumwe mubyibuka byambere mu buzima bwe ni urugendo rw'umwaka wa Alegizandere wimyaka 12 mu nkambi mu kigo cya Evpatoriya. Ngaho, yahuye bwa mbere aziranye kandi avugana cyane, ariko nanone yahuye na mbere imyitwarire itesha agaciro yubahirizwa. Avuga ko abantu bakuru n'abana bombi bashobora kumusangamo n'intoki kandi urebe igihe kirekire.
- Mu bwana, nahungabanye gusa ko ntashobora kugenda kandi nagize intege nke kurusha abandi. Ahasigaye, nari byose nkabandi: Inyungu, ibyo nkunda ... sobanukirwa byose natangiriye kuri 14-16, igihe nayoboraga ishuri. Hanyuma scoliose yantekereje, kandi numvise ko bidakwiriye gutegereza, "yibuka.
Alexander yiganye murugo, yarangije kwishuri afite icyemezo cya 9.3. Asobanura gusabana kwe, ariko hari ibitekerezo byinshi - "hrenovo". Ntabwo byari bishimishije kuba inshuti na we, yemera.
"Nize muri kaminuza kugira ngo mpanire ko nshoboye"
Nyuma yishuri, umusore yinjiye muri kaminuza ya Brest kugirango yandike inzandiko. Umwihariko wabazwe kubera kudashishikaye, ahubwo nubushobozi bwumubiri. Alegizandere yahagarariye ko abacungamari bicaye ku meza bakayitekereza - amahitamo nkaya yaje kuri we. Belorus avuga ko yagombaga kwiga kwishyurwa: Nta nyungu ku bantu bafite ubumuga batatangiriye. Gusaba Minisiteri y'Uburezi - Bubi. Nibyo, Alexandre "yakomanze" kugabanyirizwa kubera imikorere myiza.
Ati: "Igihe nari ngiye gukora, mwarimu wanjye w'imibare - yari umuntu ushyira mu gaciro - sinasobanukiwe n'impamvu nkeneye, kandi navuze ko nzamara umwanya. Hanyuma narababajwe ngerageza kwerekana ko nshoboye. Ariko amaherezo, nasanze ubumenyi bwishuri bwangiriye akamaro kirenze kaminuza, - umugabo aramwenyura. - Muri kaminuza, twagombaga kuzamuka igorofa na se, kandi ku munota w'iminota icumi uhereye aho habaye ngombwa kugira umwanya wo ku nyubako yo mu rwego rwa kane - kugeza mu kiganiro gikurikira. Twasabye kwinjira mu mwanya no kugira ibiganiro ku magorofa ya mbere, ariko ya Zavorkapler yatanze igisubizo cyoroshye: "Ntabwo twaguhamagaye, iyi ni yo guhitamo kandi icyemezo, kidakwiye, ikindi kizagera aho uri.
Igihe yiga Alexandre yabonye umwarimu we w'igihe gito n'ibikoresho byinshi by'ububiko hamwe ninyandiko: umugore yarihutiye kwitiranya kandi ko ugikeneye gukora umusoro. Noneho umusore yashidikanyaga ko ashobora gukora byihariye.
Kaminuza Alegizandere yarangije muri Mutarama 2012 - Hanyuma, serivisi imuha akazi kumadorari 100. Amahirwe nkaya yatanzwe nkigikorwa cyintwari, umugabo yibuka. Mugihe cyakazi, amafaranga yubumuga ahagarikwa - ahanini amafaranga amwe. Ibigonze ntabwo byatwitse cyane no gushaka gufata umuntu wamugaye. Ariko umusore ntabwo yemera ko uburwayi bwe ari inzitizi nini kukazi gasaba imbaraga z'umubiri, kuko ubwonko bwe bukora neza.
- Kandi ntibishoboka rwose kubona umujyi muto udafite briton. Kuva mu 2014, ninjiza byibuze muto, ariko amafaranga kuri interineti: Icyambere nakoraga no kwandika no kuba umuyobozi ukemuwe, hanyuma nkora akazi ko kuba umuyobozi ku huriro - Nashoboye kwinjiza na miliyoni 400 ku kwezi. Noneho akingura IP, akora ubucuruzi. Ibi, byukuri, ni byiza cyane kwita ibitekerezo, ariko isoko riratunganijwe cyane, - aramwenyura. - Muri rusange, nkuko byazanywe, ndabikora: Ndabara gusa ku mbaraga zawe.
Byongeye kandi, mugihe runaka yaremye umuyoboro we wa YouTube kandi usuzuguritse kubibazo. Avuga igihe amafaranga ya mbere y'abari bateraniye aho yakiriwe, yatangajwe: bisa nkaho byakwirakwijwe cyane, ariko imvugo ifatika gusa - kandi abantu biteguye kwishyura. Umunsi umwe, yinjije inshuro esheshatu kurusha umushahara we wa buri kwezi. Numutwe we yinjiye mu mushinga we, ariko nyuma ajya ku bacuruzi. Noneho Alegizandere arashaka kwiteza imbere no kubona akazi keza, kuba ingirakamaro kandi ubukungu.
- Niteguye gukora ahantu hose: muburyo bwo kwiga, numvikana kwiga. Gusa sinshobora gukora muburyo: Nzi gushushanya, ariko ntabwo ari ugushushanya - oya, aramwenyura. - Nakunze igihe rwose mfite umuyobozi wubuyobozi, icyarimwe nakoze imirimo yumuyobozi.
"Abantu rimwe na rimwe babaza ikibazo:" Kandi ujya mu musarani? ""
Noneho kimwe cya kabiri cyumunsi Alegizandere yagiye kukazi, igice - kugirango atsinde iyo ndwara. Kumyaka 32, umugabo apima ibiro 23, arya ibiryo byoroshye gusa. Ariko yari agifite amahirwe yuko ashobore guhumeka no kurya nta bikoresho byihariye. Alexandra ubu ni scoliosise yicyiciro cyanyuma hamwe no guhindura igituza, inzego ntizimutse ukurikije amategeko: urugero, impyiko yibumoso iri munsi yinda.
Uburyo bwingenzi mugitondo ni kwambara corset ya orthopedic: tutamufite, Alexandre ntashobora gukora kumunsi. Kwambara corset bifasha nyina, kimwe nibibazo byinshi, aho abantu bafite ubuzima bwiza basiga muminota mike.
- Abantu rimwe na rimwe babaza ikibazo: "Ujya mu musarani?" Mu buryo? Ku musarani. Umugabo agira ati: Ndasobanutse ko nanjye ubwanjye sinshobora kuva mu mutego, ariko ibintu byose bibaho kimwe n'abandi bantu. " - 90% i ishyari risiga. Sukura amenyo yawe kandi ndashobora kwigenga, sinshobora guteka.
Mu gihe cy'itumba, yatowe gutembera rimwe mu kwezi: Biragoye cyane kugera kuri brest, kandi Alexandre yagonze, kuko adafite ibinure hafi. Mu mpeshyi asiga gufata urugendo rimwe mu cyumweru. Buri munsi, mbere yakazi, Alexandre avi atwara amaboko mato. Niba ibi bidakozwe, inzira ya atrophy izagera kumaboko.
Gutegura ikusanyirizo ry'amafaranga mu biyobyabwenge bikozwe n'isoni: yemera ko bidakwiriye cyane kandi bisa no gusaba imfashanyo. Yamaze kubona nk'urusengero, igihe yasuraga serivisi: abantu bamusize ibiceri. Kandi nyuma yo gukorana na sisitemu na bureaucracy, umugabo ntabona ibisobanuro akwirakwizwa kugirango afashe leta. Nubwo bimeze bityo ariko, Alexandre abona hirya mubuzima bwe.
Agira ati: "Ku bw'amahirwe, indwara ibabaza gusa imiterere yanjye.
Niba ushaka gufasha Alexandre hamwe na Alexandre, ukandikira muri telegaramu ku izina @alexANDER_Moisenyo.
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