Ukuphila ngokuxilongwa "kwe-spinal muscle misle atrophy" kwesinye isikhathi akunakwenzeka iminyaka eminingana. U-Alexander Moisenko ovela kuZhabinka wayenenhlanhla: Wayeneminyaka engama-32, futhi angadla ngokuzimela nokuphefumula. Ngokwesiko, eBelarus nasemhlabeni, usizo olukhulu luhlose ukwelapha izingane, mayelana neziguli ezikhunjulwa kabanzi, kungaba nge-oncology noma izifo zofuzo. Manje, ngenxa yesikhathi nesayensi, izakhamizi ezinganakwa ezingenandaba zihlela ngenkuthalo imali futhi zizama ukufakazela isimo lapho impilo yomuntu ibiza ama- $ 2 million - lelo ntengo yomuthi kubantu nge-SM. Ngeminyaka yamashumi ayisishiyagalolunye, futhi u-Alexander wayengumntwana onezinto ezihlwabusayo zomsipha, kepha ngaleso sikhathi lesi sifo sathathwa njengenganakwa lutho. U-Belorus ukhumbula ukuthi odokotela ababhekene nethemba batshela abazali bakhe kanjani ukuthi: "Kungekudala". Kepha le nsizwa iyaqhubeka nokuphila, ifunda komusha futhi ifune indawo yayo phakathi kwabantu abaphilile.
IDemo lulbez
I-Spinal Musce Atrophy (SMA) - isifo sezakhi zofuzo, okuholela ekwandiseni ubuthakathaka bemisipha. I-Smya inika ukungatholakali noma iphutha leprotheni eqinisekisa ukusinda kwezimoto ze-neurons (amaprotheni e-SMN). Lesi sifo singazibonakalisa ngeminyaka ehlukene, futhi cishe njalo sithuthuka. Ekuqaleni, abagulayo bazizwa bebuthakathaka emisipha yemilenze, imisipha yomzimba wonke kancane kancane iyabuthaka - kuze kube yilapho enesibopho sokugwinya nokuphefumula. Kubalulekile ukuqonda ukuthi ubuhlakani babantu abane-CMA busindiswe ngokuphelele.
Kunezinhlobo ezinhlanu ze-sma - kusuka ku-0 kuye ku-IV. Izinga lincike ngesikhathi sokubonakaliswa kwalesi sifo kanye nobunzima bezimpawu: okokuqala ukubonakaliswa kwaqala futhi izimpawu ziphonswa, isikhumba sinolaka.
Photo: Totherinsma.com.
Izinhlobo ezinzima kakhulu zingu-0 futhi i. Zero zibonakalisa, njengomthetho, ngesonto lama-30 yokukhulelwa mama: Ukuhamba kwengane kuyancipha. Imvamisa izingane ezinjalo ziyafa ngaphambi, ngesikhathi noma kungekudala ngemuva kokuzalwa. Izimpawu zohlobo lwe-SMA ngivele ezisanda kuzalwa, kanti lesi sifo siqhubeka ngokushesha ngokushesha. Imvamisa lezi zingane aziphili iminyaka emi-2. Uhlobo lwe-SMI II lubonakaliswa ngonyaka wokuqala noma lwesibili lwempilo: izingane ezinjalo zingahlala, kepha zihambe - akusekho. Izimpawu zohlobo lwe-smii III zingazibonakalisa ebuntwaneni noma ebusheni, abantu abanalolu hlobo bangahlala futhi bathathe kancane ngisho nokuthatha kancane. Uhlobo lwe-SMI IV seluvele luboniswe ebudaleni, njengomthetho, abantu abangaphezu kweminyaka engama-35. Imisipha yabo yenza buthaka kancane, futhi kancane kancane umuntu ulahlekelwa yithuba lokuhamba.
Iziguli ezinezinhlobo ze-II ne-III zingaphila njengabantu abajwayelekile, kepha zinezinkinga zokuphefumula nezinye izikhathi ngokuhamba kwesikhathi.
Manje ezweni okungenani izingane ezingama-86 kanye nabantu abadala abangama-41 abanezinhlobo ezahlukene ze-SMA - bangu-127 kuphela. Kepha zingaba ngaphezulu: irejista yeziguli ezinezifo zezeluleko ze-Heredical Neuromuscular zenziwa kuphela unyaka. Ngaphezu kwalokho, kukholakala ukuthi ukwehla okunjalo kofuzo kucishe kube yizinkulungwane eziyi-1 kwezingu-6 ezisanda kuzalwa.
Abantu abaningi bakhuluma ngokuphathwa kwezingane nge-spinal muscular atrophy: abantu bazwelana nezingane futhi baqoqa imali ngentshiseko ngokwelashwa kwabo. Abantu abadala baze bangafanele bathembele kulolo sizo.
Ngokusho kwenhlangano yomphakathi "genom", sinabadala abangu-41 ezweni lethu esinalesi sifo. Njengomthetho, bane-II-III Thayipha i-SM, ngaphansi kwe-IV. Kulezi zimo, lesi sifo siqhubeka kancane, kepha owokugcina wako konke kucishe kufane - idivaysi yomoya wokufaka umoya wokufaka amaphaphu nokuphila okuvikelekile komoya ogcinwe.
"Ezikhungweni zeMoscow, bangiphatha njengombukiso"
I-Hero yethu Alexander iyagula II uhlobo lwe-SM. Le ndoda izalwe eZhibanka eminyakeni edlule. Unina wabe esetshela ukuthi u-Alexander wazalwa enganeni enempilo ngokuphelele, wayesindayo futhi ekhula kunontanga: ngokushesha wafunda ukuma ngezinyawo zakhe wahlala. Ingxenye, waqala ukuhamba ngokuvalwa, wacisha unyawo emlenzeni. Odokotela bathi umfana uvila nje, khona-ke unesifutho, kamuva - ubambe iqhaza ngokungafanele ku-pelvis. Ngemuva kokuvakashela uSolwazi, kwavela izinsolo zikaSma.
- Ngemuva kwalokho kwakungenteke futhi kufundwe okuncane. Eminyakeni yokuqala, omama abane bangiyisa kodokotela bakwamanye amadolobha nawamazwe, kulowo okugcina kwakukholelwa ukuthi angangiphamba. Wabe esekhumbula ukuthi ezikhungweni ezifanayo eMoscow baphathwa njengombukiso: bahola abafundi, bacela ukukhombisa ulimi futhi akukho ukwelashwa noma ukuvuselelwa. Yebo, bakubiza ngokuthi ukuxilongwa, kepha konke kwehliswe kube yilokho "uzokufa maduze." Okufanayo bekunjalo ngaphambi kwesikole. Ababelethi bathi: "Izingane ezinjalo ziphila iminyaka eyishumi nambili," kusho lowo muntu.
Noma kunjalo, eminyakeni eyi-12 eyedlule, u-Alexander wawela isibikezelo esiphezulu. Ukhumbula lokho ngaleso sikhathi asakwazi ukugoqa embhedeni alawule izandla zemishini. Manje unethuba elinjalo. Ebusuku, kunengcingo eseduze kwakhe, futhi abazali benza ubizo ukuze baphendule indodana yabo. I-Stroller ingugesi kuphela. Ngokuhamba kwesikhathi, konke kuba kubi kakhulu.
Enye yezinkumbulo zokuqala ezikhanyayo empilweni yakhe uluhambo luka-Alexander oneminyaka engu-12 ubudala oluya ekamu e-Evpatoria. Lapho, waqala wahlangana nabantu engijwayelene naye futhi waxhumana ngenkuthalo, kodwa futhi wahlangana okokuqala nokuziphatha okuhlekisayo kwabadlulayo abangahleliwe. Uthi bobabili abadala nezingane bakwazi ukuhambisa kuye ngeminwe yakhe futhi babheke isikhathi eside.
- Kusebuntwaneni, ngangiphazamiseka kuphela ukuthi angikwazi ukuhamba futhi ngangibuthakathaka kunabanye. Kwabanye, ngangifana nakho konke okufana nawo wonke umuntu: izintshisekelo, izinto zokuzilibazisa ... ukuqonda konke engikuqale ngo 14-16, lapho ngigijimela isikole. Lapho-ke i-Scoliosis yangibonisa, futhi ngaqonda ukuthi akukufanele ukulindile, "uyakhumbula.
U-Alexander wafunda ekhaya, waphothula esikoleni ngesitifiketi sika-9.3. Uchaza ukuhlangana kwakhe nomuntu oyedwa, kepha izwi elikhulu kakhulu - "Hrerevo". Kwakungathandeki ukuba nabangane naye, uyakholelwa.
"Ngifunde eNyuvesi ukuze ngizibonele ukuthi ngikwazi"
Ngemuva kwesikole, lo mfo wangena e-University of Brest ukuze ibhalwe yi-accounting. Okukhethekile kwabalwa ngokungazethembi, kepha ngamakhono omzimba. U-Alexander wamelwa ngokuthi ama-accountants ahlezi etafuleni futhi abheke lokho - inketho enjalo yeza kuye. UBelorus uthi kwakumelwe afunde ukukhokhelwa: Azikho izinzuzo zabantu abakhubazekile abanganikezwanga. Ukufaka isicelo eMnyangweni Wezemfundo - ngeze. Kuliqiniso, khona-ke u-Alexander "wangqongqoza" isaphulelo ngenxa yokusebenza okuhle.
"Lapho ngizokwenza, uthisha wami wezibalo - wayenengqondo enkulu - bengingaqondi ukuthi kungani ngiyidinga, ngathi ngivele ngichithe isikhathi. Ngabe sengicasulwa futhi ngazama ukuzibonakalisa engikwazi. Kepha ekugcineni, ngabona ukuthi ulwazi lwesikole lwaluwusizo kimi ngaphezu kwenyuvesi, - indoda iyamamatheka. - Eyunivesithi, kwakudingeka sikhuphuke esitezi sesihlanu nobaba, futhi ngoshintsho oluyimizuzu eyishumi ukusuka lapho kwakudingeka ukuba ube nesikhathi kwesinye isakhiwo esitezi sesine - kwinkulumo elandelayo. Sicele ukungena esimweni futhi senze izinkulumo ezitezi zokuqala, kepha iZovekapler yanikeza impendulo elula: "Asikubizelanga, lokhu ukukhetha kwakho nesinqumo, esingafanelekile.
Ngenkathi ukutadisha u-Alexander wabona uthisha wakhe wesikhashana namaphakethe amakhulu amafolda anemibhalo enemibhalo: Owesifazane ubephuthuma enkulumweni futhi wakhalaza ukuthi usadinga ukugijima entela. Ngemuva kwalokho umfana wangabaza ukuthi angasebenza ngokukhethekile.
IYunivesithi u-Alexander athweswe iziqu ngoJanuwari 2012 - Ngemuva kwalokho inkonzo yezenhlalo yamnika umsebenzi ngama- $ 100. Ithuba elinjalo lafakwa esikhundleni sesenzo sobuqhawe, indoda iyakhumbula. Uma kwenzeka umsebenzi, imvume yokukhubazeka ikhanseliwe - ngemali efanayo. Amafemu ayengashiswa ngokungathi sína yisifiso sokuthatha umuntu okhubazekile. Kepha lo mfo akakholelwa ukuthi ukugula kwakhe kuyisithiyo esikhulu emsebenzini ongadingi amandla ngokomzimba, ngoba ubuchopho bakhe busebenza kahle.
- Futhi cishe akunakwenzeka ukuthola idolobha elincane ngaphandle kweBriton. Kusukela ngo-2014, ngithola okungenani okuncane, kepha imali kwi-Intanethi: okokuqala ngangizibandakanya kumasayithi e-copywriting, adaliwe futhi asebenza njengoMlawuli kwizithangami - ngikwazile ukuthola u- $ 400 ngenyanga. Futhi manje wavula i-IP yakhe, wahlanganyela ekuhwebeni. Lokhu, yiqiniso, kulungile ukubiza ukuqagela, kepha imakethe ihlelwe, - uyamamatheka. - Ngokuvamile, njengoba kuveziwe, ngiyakwenza: Ngibala ngamandla akho kuphela.
Ngaphezu kwalokho, okwesikhashana wadala isiteshi sakhe se-YouTube futhi ehlekelele ekuphenduleni. Uthi lapho kutholwa isamba sokuqala ezilalelini, sishaqekile: kubonakala sengathi sisakaza konke okwakude kwaziwa, kodwa ulimi oluqondakalayo kuphela - futhi abantu bakulungele ukukhokhela. Ngelinye ilanga, wathola imali ephindwe kasithupha kuneholo lakhe lanyanga zonke. Ngekhanda lakhe wangena kwiphrojekthi yakhe, kodwa ngokuhamba kwesikhathi waya kubahwebi. Manje u-Alexander ufuna ukuthuthukisa futhi athole umsebenzi omuhle, abe usizo futhi enomnotho.
- Ngikulungele ukusebenza noma kuphi: empeleni, kulula ukutadisha. Angikwazi nje ukusebenza ekwakhiweni: Ngiyazi ukudweba, kepha hhayi ukudweba - cha, uyamamatheka. - Ngiyithandile impela isikhathi lapho ngingumphathi wenkundla, ngasikhathi sinye ngathola imisebenzi yemenenja.
"Ngezinye izikhathi abantu babuza lo mbuzo:" Uyakuya kanjani endlini yangasese? ""
Manje uhhafu wosuku u-Alexander uya emsebenzini, uhhafu - ukunqoba lesi sifo. Eminyakeni engu-32 ubudala, indoda enesisindo esingamakhilogremu angama-23, idla kuphela ukudla okuthambile kuphela. Kepha wayesenenhlanhla yokuthi angaphefumula futhi adle ngaphandle kwamathuluzi akhethekile. I-Alexandra manje isisifo se-scoliosis yesigaba sokugcina ngokuguqulwa kwesifuba, izitho zangase zihambile ngokwemithetho: ngokwesibonelo, izinso zesobunxele zingaphansi kwesisu.
Inqubo ebaluleke kakhulu ekuseni ukugqoka i-corset ye-orthopedic: ngaphandle kwakhe, u-Alexander akakwazi ukusebenza phakathi nosuku. Ukubeka i-corset kusiza umama wakhe, njengasezigamekweni eziningi zamabhanal, lapho abantu abaphilile ngokomzimba beshiya imizuzu embalwa.
- Ngezinye izikhathi abantu babuza umbuzo: "Uya kanjani ethoyilethi?" Ngomqondo? Endlini yangasese. Kuyacaca ukuthi mina uqobo angikwazi ukuvela ku-stroller, kepha konke kwenzeka kanye nabanye abantu, "kusho indoda. - 90% nginomona amaqabunga. Hlanza amazinyo akho futhi ngikwazi ukuzimela, angikwazi ukupheka.
Ebusika, wakhethwa ukuba ahambe cishe kanye ngenyanga: Kunzima ngokwengeziwe ukufika kuBrest efanayo, futhi u-Alexander washeshe waqina, ngoba akanalo ungqimba olungakhululeki. Ehlobo ushiya ukuhamba ngezinyawo kanye ngesonto. Nsuku zonke, ngaphambi komsebenzi, amadolo ka-Alexander anikela ngenxa ye-dumbbell encane. Uma lokhu kungenziwa, inqubo ye-atrophy izofika ezandleni.
Ukuhlela ukuqoqwa kwemali kwi-Belarus yezidakamizwa kunamahloni: ukholelwa ukuthi akukufanele futhi kubukeka sengathi kunesicelo sezipho. Usevele enjalo esontweni, lapho evakashela le nkonzo: abantu bashiyele izinhlamvu zemali nanoma ngubani. Futhi ngemuva kokuxhumana nohlelo kanye ne-bureaucracy, indoda ayiboni incazelo ekusakazweni kosizo. Noma kunjalo, u-Alexander ubona inhlalo enkulu empilweni yakhe.
Uthi: "Ngenhlanhla, lesi sifo silimaza kuphela isimo sami somzimba," kusho yena.
Uma ufuna ukusiza u-Alexander ngomsebenzi, umbhalele e-Telegraph kwigama lesidlaliso @AlexAnder_Moisenko.
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