Antek ane makore gumi nemashanu uye ane zviroto zvishoma. Angada kuenda kuchikoro uye kuonana neshamwari. Fema pasina chinofema uye buda pamubhedha netsoka dzako. Zviroto zvaamai vake Barbara zvakatonyanya kupfava: “Zvakakwana kana akagara pasi, achifamba, adya chimwe chinhu, kana kuti kunyora email noruoko rwake rwose, kwete chigunwe chake bedzi.” Mukana wevari vaviri mushonga mutsva, uyo muPoland… hauzove.
Antek Ochapski ane SMA1, acute form of spinal muscular atrophy. Kunzwa kwake uye kubata kwake hazvikanganiswe, uye kukura kwake kwekuziva uye manzwiro ndekwenguva dzose. Mukomana uyu akapedza chikoro chepuraimari nehonours uye avhareji yegiredhi rechitatu yaive 5,4. Iye zvino ari kudzidza pane imwe gymnasium muKonin ari oga pamba. Anodzokera kuchikoro kamwe chete pavhiki uye anobatana nekirasi. Ane zvakawanda zvezviitiko zvekunze: kudzoreredza, misangano nenyanzvi yekutaura uye nyanzvi yezvepfungwa. Mukuwedzera, kune kushanyirwa kwevhiki nevhiki nachiremba uye mukoti. Chete neMugovera iye akasununguka, kazhinji anoenda kumabhaisikopo naamai vake neshamwari Wojtek. Anonyanya kufarira mafirimu ezvesayenzi.
Kutarisira mhuri kwakafanira kwakanonotsa kukura kwechirwere asi hakuna kuchimisa. Sekutaura kunoita Mai Barbara, vari kurwira mwedzi wega wega. “Antek anogara nechikwereti. Asi ane mungava woupenyu hwake kwaari oga. Ane hunhu hunoshamisa hwekupona, haamboregi kurwa kusvika kumagumo. Takaziva nezvechirwere paaiva nemwedzi mina, vazhinji vevarwere vanofa pakati pemakore maviri ne2. Antek atova gumi neshanu ".
Kusvikira munguva pfupi yapfuura, marudzi ose epinal muscular atrophy akabatwa nekurapa kwezviratidzo chete, kusanganisira kurapwa kwepanyama, kurapwa kwemapfupa, uye kubatsirwa kufema. Zhizha rino zvakazoitika kuti mushonga wekutanga unoshanda kudzoreredza mazinga eiyo SMN protein, iyo kushomeka kweiyo pasi peSMA, yakagadzirwa. Zvichida munguva pfupi, varwere vanorwara zvakanyanya vachakwanisa kubvisa mweya wekufema, kugara pasi, kusimuka pachavo, kuenda kuchikoro kana kushanda. Maererano nenyanzvi, kupora hakusati kuchiratidzika kuva kunobvira. Parizvino, mhuri dzePoland dzine spinal muscular atrophy dziri kukumbira Mutungamiri Beata Szydło kuti vavimbise kuwanikwa kwemushonga pasi pekukasika uye kubhadharwa. Kirasi yaAntek, vamwe vadzidzi vechikoro chepakati nemhuri dzavo vakapinda muchiito. Munhu wese anotumira tsamba dzepfungwa achikumbira rubatsiro. “Ndinoda kukoka Prime Minister kumba kwedu. Muratidze mashandiro atinoita uye kuti ingani zvinoenderana nekudzoserwa. Mushonga mutsva uyu wakatipa tariro yekuti pane mukana kune varwere veSMA. Chirwere icho kusvika munguva pfupi yapfuura chaiva chirango. “
Mushonga unokwanisa kudzosera fungidziro yerufu rwusingadzivisiki wave kuwanikwa munyika dzakawanda muEurope nepasirese pasi pechirongwa chinodaidzwa kuti Early Access Programs (EAP). Mutemo wePoland haubvumiri mhinduro yakadaro. Zvisungo zvakatsanangurwa neBazi rezvehutano hazvipi mari yekushanya kumwe chete kwekurapa kunodiwa kuti uwane mushonga, tisingarevi mari yekugara muchipatara.
SMA1 (spinal muscular atrophy) imhando yeacute spinal muscular atrophy. Zviratidzo zvekutanga zvechirwere, zvakadai sokushayikwa kwekufambira mberi mukukura kwemotokari, kuchema kwakanyarara kana kuneta nyore paunenge uchiyamwa uye kumedza, zvinowanzoonekwa mumwedzi wechipiri kana wechitatu wehupenyu. Mamiriro emurwere anowedzera zuva nezuva. Tsandanyama dziri mumigumo, mapapu negurokuro zvinopera simba, zvichiita kuti munhu asafeme uye atadze kumedza. Varwere havambofi vakawana kugona kugara vega. Chirevo chechirwere chechirwere chakashata, SMA inouraya. Ndiyo muurayi mukuru wevana akatemerwa magene pasi rose. Spinal muscular atrophy inokura semugumisiro wekuremara kwemajini (mutation) mujene rinokonzera kukodha SMN, puroteni yakakosha pakushanda kwemotor neurons. Mumwe mu35-40 vanhu vane shanduko yakadaro muPoland. Kana vabereki vese vari vatakuri vehurema, pane njodzi yekuti mwana achava neSMA. MuPoland, chirwere chinoitika nehuwandu hwe1 mu5000-7000 kuberekwa uye inenge 1: 10000 muhuwandu.
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