Live asingafi: nyaya Charli Garda

Charlie Gard - mukomana kubva UK, iyo pfungwa dzakawanda wayo chisingarapiki chinouraya. Zvino vabereki vake vari kuedza kuwana experimental kurapwa, tichitarisira kuti aigona kubatsira mwanakomana wavo kuhwina isingawanzowanikwi chirwere - "Kuparadzwa DNA," riri kazhinji chinokonzera rufu vacheche muna mwedzi yokutanga hwavo. Asi chii chinokonzera chirwere ichi uye nei nekukurumidza kudaro anoparadza muviri kwevacheche?

mukomana wacho kuongorora chirwere

Charlie akaberekwa musi August 4 gore rapera, asi kubva October, chinoramba muchipatara ari muLondon muchipatara, Great Ormond Street. Zvinozivikanwa kuti mukomana-mwedzi 11 okuberekwa havagoni kufema pachavo, vanogona kunzwa uye kuona, uye chirwere pfari. Vabereki vanoda kuenda naye kuna United States kuti nokuparura ane experimental kurapwa, asi vanachiremba hwomwana havabvumirani. Vanoti kurapa uchaponesa mwana, uye achava chete mazhinji kutambura kwake. The nyanzvi, uyo nguva yose iyi ndaona Charlie, vanoti: zvikuru kuda, kuti vanogona kuita - ndiko kuti kudzima upenyu-rutsigiro michina.

nyaya Charlie kuti takasimudzira gakava kodzero vabereki vanosarudzira kurapwa vana vavo. Matare British vaiva kudivi muchipatara, zvokuti Charlie aifanira akochonorwa kubva midziyo kuti 30 June. Zvisinei, vabereki vakakumbira vanachiremba kumbosendeka nzira iyi, kuti nguva yakawanda kuti uti bhayibhayi mwana.

Sei DNA kuparadzwa

Entsefalomiopatichesky mitochondrial DNA kuparadzwa chirwere, akatambudzika nokuda mukomana, zviri kukonzerwa kunotouraya mu magene kuti vabatsire kuramba DNA yakawanikwa mukati mitochondria (cellular "simba miti"), izvo basa rokutendeutsa zvinokurisa kupinda simba, uyewo pachako yakatarwa ayo akasiyana DNA.

Kana ari Charlie mutation kwakaitika zviratidzo inonzi RRM2B. Anotora chidimbu ari kusikwa mitochondrial DNA. The mutation kunokonzera vasanyanye uwandu mitochondrial DNA, uye haabvumiri basa kupengereka mitochondria.

Ichi chinobata mukushanda zvomukati zhinji, kunyanya uropi, tsandanyama uye itsvo, vane yakakwirira simba zvinodiwa. Somugumisiro yacho chirwere kunotungamirira tsandanyama simba, microcephaly (achidzikisa kukura musoro mwana), itsvo matambudziko, pfari uye kunzwa kurasikirwa. Kuneta tsandanyama muzvirongwa kufema kwacho, kungava dambudziko chakakomba, izvo zvakaitika kuna Charlie. Zvino mukomana havagoni ufuridzire pamusoro yavo.

Life anotarisirwa uye kuparadzira munyika

chirwere ichi zvikuru kusingawanikwi: pamberi Charlie aizivikanwa chete anenge 15 vacheche kubva pasi pose vane zvakafanana nechirwere, uye kuti mukomana.

Zviratidzo zviri chirwere kutanga kuonekwa mangwanani zvakakwana. Panyaya Charlie Somuenzaniso, vakatanga kuonekwa apo mukomana aiva mavhiki mashoma. Uyewo, vana vanotambura ichi kazhinji havagoni kurarama mucheche. Maererano neimwe ongororo yakaitwa 2008, vana vanomwe pamwe chete chirwere sezvo Charlie, akafa kunyange vasati vasvitsa makore 4 months.

Zvinosuruvarisa ichi chisingarapiki syndrome. Chinhu bedzi anogona kuita vanachiremba - ndiko kupa rutsigiro nerubatsiro kana kushandisa dzinoshandisa kubatsira pamwe pakufema.

Ndinofanira tariro ive experimental kurapwa

vabereki Charlie vanoda kuedza kuva experimental kurapwa ari mwanakomana wake - nucleoside kurapa kuti DNA zvinhu isingagoni kuitwa nemasero ayo. Kubudirira kurapwa ichi harisati chizadzikiswe, kunyange zvazvo izvi zvisati zvaitika raishandiswa varwere vakatambura kubva zvishoma kwazvo siyana chirwere, rinozivikanwa TK2 mutation. Zvisinei, kurapa asina kushandiswa varwere kunotouraya RRM2B. Kunyange chiremba uyo pakutanga akanga akagadzirira kubatsira Garda aine experimental kurapwa, uye gare gare akamanikidzwa kubvuma kuti kurapa ichi angangotadza kurapa Charlie, sezvo mwana ari akazotevera nzendo chirwere.

Munguva ichangopfuura, vamiririri Children Chipatara muItaly kunge aronga kuenda Charlie kwavari kupa anodiwa hanya naye, asi London Hospital vanachiremba vakaramba kuita kudaro, dzichishandisa pamutemo zvikonzero. Boris Johnson, uyo ari gurukota Foreign Affairs Huru Britain, akatiwo: "Chisarudzo ichi kunoenderana nyanzvi dzokurapa pfungwa, vachitsigirwa nematare", iro kana uchifunga chikuru kufunga zvinodiwa mwana.