Kuti ugare neyekuongororwa kwe "musana muswe atrophy" dzimwe nguva hazvibviri kwemakore akati wandei. Alexander Moiseenko anobva kuZabinka aive nerombo: Aive nemakore makumi matatu nematatu, uye anogona kudya akazvimirira uye kufema. Netsika, muBerlarus uye nyika, rubatsiro rukuru rwunotarisirwa pakurapa vana, nezvevarwere mukukura vanoyeuka kazhinji, kungave kurwara kana genetsic hosha. Zvino, nokutenda kwenguva nesainzi, vasina-vasina mhosva vanoshingairira kuronga mari uye vari kuedza kuratidza kuti hupenyu hwomunhu hunobhadhara madhora maviri emamiriyoni - uyu mutengo wemushonga kune vanhu vane sm. Muzana makumi mapfumbamwe Alexander aivewo ave mwana nemusango, asi panguva iyoyo chirwere ichi chainzi chisingarapike. Belorus anoyeuka kuti vanachiremba vanobva kune vasina tariro vakaudza vabereki vake kuti: "Munguva pfupi. Asi jaya rinoramba richirarama, dzidza kubva kune mutsva uye tsvaga nzvimbo yake pakati pevanhu vakagwinya.
Pfupi likbez
Spinal Muscle Atrophy (SMA) - genetic neuromuscular chirwere, inotungamira kuwedzera kushaya simba kwemasuru. Smya anopa kusavapo kana kuremara kwemapuroteni anovimbisa kupona kwemota neurons (SMN protein). Chirwere ichi chinogona kuzviratidza pamazera akasiyana, uye zvinogara zvichifambira mberi. Pakutanga, vanorwara vanonzwa vasina kusimba mumapundu emakumbo, mhasuru dzemuviri wese dzinopera simba zvishoma nezvishoma - kusvika avo vane mutoro wekumedza nekufema. Izvo zvakakosha kuti unzwisise kuti hungwaru hwevanhu vane cma chinoramba chose kuponeswa.
Kune marudzi mashanu eSMA - kubva pa0 kusvika kuIV. Iyo huwandu hunoenderana nenguva yekuratidzwa kwechirwere uye kuomarara kwezviratidzo: Zviratidzo zvezviratidziro zvinotanga uye zviratidzo zvinotaurwa, ganda racho.
Photo: Paynossma.com.
Mhando dzekutyaira ndeye 0 uye I. ZERO kuratidzira pachako, sekutonga, pavhiki makumi matatu ekuzvitakura nhumbu: Kufamba kwemwana kunoderedzwa. Kazhinji vana vakadaro vanofa zvisati zvaitika, panguva yekuzvarwa kana mushure mekuzvarwa. Zviratidzo zveMU Rudzi rwandinobuda mumachinda mitsva, uye chirwere ichi chinofamba nekukurumidza. Kazhinji vana ava havararame kusvika pamakore maviri. Smi II Type inoratidzwa mugore rekutanga kana rechipiri rehupenyu: Vana vakadaro vanogona kugara, asi kufamba - vasisiri. Zviratidzo zveSmii Type III zvinogona kuzviratidza ivo pachavo muhudiki kana kuyaruka, vanhu vane mhando iyi vanogona kugara uye kunyange kutora zvishoma. Smi IV mhando yatove yatooneswa mukukura, semutemo, vanhu vanopfuura 35 makore. Misumbu yavo inonetesa zvishoma, uye zvishoma nezvishoma munhu anorasikirwa nemukana wekufamba.
Varwere neI neIII uye III TYI DZINOGONA KUTI VANOTI VANOTENDA VANOTI, asi vane zvinonakidza uye zvimwe zvinonetsa nekufamba kwenguva.
Iye zvino munyika dzinokwana gumi nevaviri vana uye 41 vakuru vane akasiyana mhando - vanhu gumi nemaviri chete. Asi vanogona kuve vakawanda: Iyo kunyoreswa kwevarwere nehurwere hwehukama neuromuscular chirwere chinoitwa gore chete. Mukuwedzera, zvinofungidzirwa kuti kuputsa kwakadaro kweGene kwasvika zviuru zvitanhatu kubva muzana vatsva.
Vanhu vazhinji vanotaura nezve kurapwa kwevana vane spinal musiki trophy: Vanhu vanonzwira tsitsi nevana uye vanoshingaira mari yekuunganidza mari yekurapwa kwavo. Vakuru kunyange havatombofanirwa kuverenga pane rubatsiro rwakadaro.
Maererano nokubatana kweruzhinji "genom", isu tine vakuru makumi matanhatu nenyika yedu nechirwere chakadai. Semutemo, ivo vane II-III Type Sm, zvishoma kazhinji IV. Mune zviitiko izvi, chirwere chinofambira mberi chinononoka, asi chekupedzisira kune zvese zvakangofanana - mudziyo wekutyaira kwemapapu uye hupenyu hwakagara mune zvinyoro-nyoro negwara rakachengetedzeka.
"MuMoscow Institution, vakandibata sechitoratidzwa"
Gamba redu Alexander rinorwara II Rudzi rwe sm. Iye murume akaberekerwa muZhizi 31 makore makumi matatu apfuura. Amai vake vakabvunza kuti Alexander akaberekerwa mumwana ane hutano hwakakwana, airema uye akagadziridzwa kupfuura vezera: akakurumidza kudzidza kumira pamakumbo ake uye kugara. Kuhaha hafu, akatanga kufamba uchivharwa, kudzima rutsoka rwake pagumbo rake. Vanachiremba vakati mukomana anongova ane usimbe, ipapo - kuti ane flatfoot, gare gare - zvisiri izvo zvinosanganisirwa muPelvis. Mushure mekushanya kwaProfesa, kufungidzira kweMa kwakaoneka.
- Ipapo zvakarapwa uye zvishoma kudzidza. Kwemakore ekutanga, mms ina yakandiendesa pamusoro pavanachiremba kune mamwe maguta nenyika, kune wekupedzisira akatenda kuti aigona kundirapa. Ipapo akayeuka kuti mune imwe nzvimbo yakafanana pamasangano eMoscow avakabatwa sezviratidziro: Vakatungamira vadzidzi, vakakumbira kuratidza mutauro uye kusarapwa kana kugadzirwazve. Hongu, vakadana kuongororwa, asi zvinhu zvese zvakaderedzwa kuchinoti "achafa munguva pfupi." Izvi zvakafanana ndizvo zvimwe chete pamberi pechikoro. Vabereki vakati vana vakadaro vanorarama makore gumi nematanhatu, "anodaro munhu.
Zvakangodaro, makore gumi nemaviri apfuura, Alexander akayambuka kufungidzira kwakanyanya. Iye anorangarira izvo saka aigona kukwanisa kutenderera pamubhedha uye kudzora mashini stroller maoko. Iye zvino ane mukana wakadaro. Usiku, kune runhare padivi pake, uye vabereki vanouya kudana kuti vatendeuke. Iyo stroller ingori chete magetsi. Nekufamba kwenguva, zvese zvinova zvakangowedzera.
Imwe yeyekutanga ndangariro dzakajeka muhupenyu hwake idudziro yemakore gumi nemaviri Alexander yekuenda kumusasa muEvpatoria. Ikoko, akatanga kusangana nevazhinji vazivikanwi uye akataurirana, asiwo akatanga kusangana nehunhu hunoshatirisa hwevanopfuura. Anoti vaviri vakuru nevana vanogona kumusunga maari neminwe yake uye kutarisa kwenguva refu pakumira.
- Mukudanana, ndakavhiringidzwa chete kuti ndakanga ndisingagoni kufamba uye ndakanga ndisina kusimba pane vamwe. Kune vamwe vese, ini ndanga ndiri zvese sezvakaita vanhu vese: Kufarira, zvekuita ... nzwisisa zvese zvandakatanga na14-16, pandakamhanya chikoro. Ipapo Scliosis yakandiratidza, uye ini ndainzwisisa kuti hazvina kukodzera kumirira, "anoyeuka.
Alexander akadzidza kumba, akapedza chikoro aine chitupa che9.3. Anotsanangura kushamwaridzana kwake neane, asi Shoko rinogona "" Hrenovo ". Izvo zvaisave zvinonakidza kushamwaridzana naye, anotenda.
"Ndakadzidza kuyunivhesiti kuti ndizviratidze kuti ndaigona"
Mushure mekuchikoro, murume wacho akambopinda muYunivhesiti yeBrest yekunyorerana mukuverenga. Nyanzvi dzakarondedzerwa kwete mukufarira, asi nekugona kwemuviri. Alexander akamiririra kuti accountan akagara patafura uye azviona - sarudzo yakadaro yakauya kwaari. Belorus anoti aifanira kudzidza kubhadharwa: hapana mabhenefiti kune vanhu vakaremara havana kupihwa. Kunyorera kuhushumiro hwe dzidzo - pasina. Ichokwadi, saka Alexander "akagogodza" mutengo nekuda kwekuita kwakanaka.
"Pandakanga ndichienda, mudzidzisi wangu wemasvomhu - aive asina musoro murume - ini ndaisanzwisisa chikonzero nei ndichiida, ndikanongotaura nguva. Ipapo ndakagumburwa uye ndakaedza kuzviratidza kuti ndaigona. Asi pakupedzisira, ndakaziva kuti ruzivo rwechikoro rwaive runoshanda kwandiri kupfuura yunivhesiti, - murume anonyemwerera. - Muyunivhesiti, taifanira kukwira pasi pechishanu naBaba, uye nekuchinja kwemaminitsi gumi kubva ipapo kwaifanirwa kuve nenguva yekune imwe chivakwa pane yechina pasi - kune iyo hurukuro inotevera. Takakumbira kupinda pachinzvimbo uye kuita hurukuro pane yekutanga pasi, asi zavorkapler yakapa mhinduro yakapusa: "Hatina kukufonera, iyi sarudzo yako uye sarudzo, isina kufanira - imwe inokwana
Paunenge uchidzidza Alexander paakangoona mudzidzisi wake emapaketi emapaketi efolda nemagwaro: Mukadzi aive achimhanya nekuda kwehurukuro ndokunyunyuta kuti iwe uchiri kuda kumhanyisa mutero. Ipapo mukomana akapokana kuti aigona kushanda mune nyanzvi.
Iyo yunivhesiti Alexander akapedza kudzidza muna Ndira 2012 - ipapo sosi yemagariro yakamupa basa remadhora zana. Mukana wakadaro wakapihwa sechiitiko chegamba, murume anoyeuka. Kana iri basa, kuremara kubvumidzwa kunodzimwa - zvine mari yakafanana. Mafemu aive akanyatsotsopiswa nechishuvo chekutora munhu akaremara. Asi murume uyu haatendi kuti kurwara kwake chidimbu chikuru kune basa risingade simba remuviri, nekuti uropi hwake hunoshanda zvakanaka.
- uye zvinokwanisika kuwana guta diki pasina briton. Kubva muna 2014, ini ndinowana zvidiki zvishoma, asi imwe mari paInternet: Kutanga ini ndaive ndakanyora, ndikagadzirwa uye ndakashanda semutongi pane maforamu - ndakakwanisa kuwana madhora mazana mana pamwedzi. Uye zvino akavhura IP yake, yaita kutengeserana. Izvi, zvechokwadi, zvakaringana kufona kufungidzira, asi musika wacho wakarongwa kudaro, - anonyemwerera. - Kazhinji, sekurumwa, ndinozviita: Ndinoverenga chete pasimba rako.
Uye zvakare, kwenguva yakati akagadzira yake YouTube chiteshi uye anodzikiswa pane accounting. Anoti kana mari yekutanga kubva kune vateereri yakagamuchirwa, yakavhunduka: inoita kunge ichipepfenyurwa zvese zvanga zvichizivikanwa kare, asi mutauro unonzwisisika - uye vanhu vakagadzirira kubhadhara. Rimwe zuva, akawana katani katatu kupfuura muhoro wake wemwedzi. Nemusoro wake wakapinda muchirongwa chake, asi gare gare akaenda kune vatengesi. Iye zvino Alexander anoda kukudziridza uye kuwana basa rakanaka, iva anobatsira uye hupfumi.
- Ini ndagadzirira kushanda chero kupi: musimboti, ndiri nyore kudzidza. Ini handingakwanise kushanda muDesign: Ndinoziva nzira yekukwevera, asi kwete yekukwevera - kwete, anonyemwerera. - Ini ndainyatsoda iyo nguva pandakanga ndiri maneja wemari, panguva imwe chete iyoyo ndakaita mabasa emaneja.
"Vanhu dzimwe nguva vanobvunza mubvunzo kuti:" Unoenda sei kuchimbuzi? "
Iye zvino hafu yezuva reAlexander anoenda kubasa, hafu - kukurira chirwere ichi. Pamakore makumi matatu nematatu, murume anorema anenge makumi maviri nematatu emakirogiramu, anodya chete chikafu chakapfava. Asi akange achiri nerombo rakanaka kuti aigona kufema uye anodya pasina zvishandiso zvakakosha. Alexandra yava scoliosis yechikamu chekupedzisira nehurongwa hwechipfuva, nhengo dzevaenzani dzakatama hadzina kuita maererano nemirairo: semuenzaniso, itsvo rekuruboshwe iri pasi pedumbu.
Maitiro akanyanya kukosha mangwanani ndeye kupfeka Orthopedic Corset: Pasina iye, Alexander haakwanise kushanda mukati mezuva. Kuisa pane Corset kunobatsira amai vake, sezvakaita akawanda ezviitiko zvezviitiko, izvo vanhu vane hutano vakasiya maminetsi mashoma.
- Vanhu dzimwe nguva vanobvunza mubvunzo: "Unoenda sei kuchimbuzi?" Mupfungwa? Kuchimbuzi. Zviri pachena kuti ini pachangu handingafambi kubva kune unodonha, asi zvese zvinoitikawo nevamwe vanhu, "anodaro mumwe murume. - 90% i godo mashizha. Cheneswa mazino ako uye ini ndinogona kuzvimiririra, ini handigoni kubikira.
Munguva yechando, akasarudzwa kuti afambe anenge kamwe pamwedzi: Zvakaoma kusvika kune imwe chete brest, uye Alexander akakurumidza kutonhora, nekuti iye haana kunge asina mafuta. Muzhizha iye anoenda kunotora kufamba kamwe chete pasvondo. Mazuva ese, vasati vasvika kubasa, Alexander mabvi anovonga kune chidiki chidiki. Kana izvi zvisina kuitwa, maitiro ekutora anozoenda kumaoko.
Kuronga kuunganidzwa kwemari kune iyo Belarus inodhonzwa inonyadziswa: Anotenda kuti hazvinyatso kukodzera uye zvinoita kunge chikumbiro chemabhenefiti. Akatosangana neicho muChechi, paaingogara basa iri: Vanhu vakamusiya mari kune chero munhu. Uye mushure mekudyidzana nehurongwa uye nehurukuro, murume haaone zvinoreva kutenderera kuti ubatsirwe kuHurumende. Zvakangodaro, Alexander anoona huwandu hwakakura pamwe muhupenyu hwake.
"Neraki, chirwere ichi chakarwadza chete chimiro changu chemuviri," anodaro.
Kana iwe uchida kubatsira Alexander nebasa, umurire kwaari muTelegraph pane zita rekuti @lexander_moiseenko.
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