Live kore e taea e mate: ko te kōrero Charli Garda

Charlie Gard - he tamaiti i te UK, kua ngā nei whakarongo ao ki tona mate mate mahu. Na e tamata ana mātua ki te kitea he maimoatanga whakamātau, tumanako e taea tauturu i te reira ratou tama, riro i te mate onge - "te kēkeno o DNA," i te mea te nuinga o te take o te mate mo kohungahunga i roto i te tuatahi torutoru marama o to ratou oraraa. Ko te aha ai tenei mate, me te aha he hohoro ai te e whakamotitia te tinana o kohungahunga?

tātaritanga o te tamaiti

I whanau Charlie i runga i August 4 whakamutunga tau, engari mai Oketopa, tonu ana falemahaki i roto i te hōhipera London, Great Ormond Street. Kei te mohiotia te reira e kore e taea e tamaiti 11-marama-tawhito manawa i runga i to ratou ake, e kore e taea rongo a kore e taea te kite, me mamae hoki i hukihuki. hiahia ana ngā mātua ki te haere ki a ia ki te Hononga o Amerika ki te whakarewa i te maimoatanga whakamātau, engari kore kaiwhakaako o te tamaiti. titau ratou e kore te maimoatanga e whakaora i te tamaiti, a ka roa noa tona mauiui. Nga tohunga, kua kite nei i tenei wa katoa Charlie, mea: ko te ngākau atawhai te nuinga, e taea te mahi e ratou - ko ki te tahuri atu te mihini te ora-tautoko.

anō take o Charlie tautohetohe i runga i nga mana o te mau metua ki te whiriwhiri maimoatanga mō rātou tamariki. he marae Ingarangi i te taha o te hōhipera, me te hua i a Charlie ki kia momotu i te mihini noa i runga i te 30 o Pipiri. Heoi, kua ui te mau metua tākuta ki te faataime tenei tukanga, ki te whai wa atu ki te mea poroporoaki ki te tamaiti.

Nahea DNA kēkeno

Entsefalomiopatichesky syndrome DNA kēkeno punaraungao, i tukua e te tamaiti, meinga e irakētanga i roto i ira e te tauturu i mau tonu DNA kitea i roto i te pungaraungao (pūtau "tipu mana"), e he kawenga mō te tahuri ngā matūkai ki te pūngao, me te tona huinga ake o te DNA rerekē.

I roto i te take o Charlie irakētanga puta i roto i te ira huaina RRM2B. e ia wahi i roto i te hanga o te DNA punaraungao. Ko te irakētanga ai te hekenga i roto i te nui o DNA punaraungao, a e kore e tukua te tikanga mahi pungaraungao.

pānga ana tēnei huru te mahi o whekau maha, rawa te roro, uaua me whatukuhu, e whai hiahia pūngao nui. Ka rite ki te hua o te syndrome arata'i ki uaua ngoikore, microcephaly (whakaiti te rahi o te matenga o te tamaiti), raruraru tākihi, haurangi, me te rongo mate. Ngoikore o te uaua whai wāhi i roto i te tukanga manawa, ka taea e waiho he raruraru nui, i te mea te mea i tupu ki Charlie. Na e kore e taea te tamaiti manawa i runga i to ratou ake.

tümanako ora me te tohatoha i roto i te ao

Ko te tino onge tenei syndrome: i mua i mohiotia Charlie anake e pā ana ki 15 ngā pēpi i huri noa i te ao e whai te taua tātaritanga, me taua tamaiti.

timata Tohu o te mate ki te puta wawe nui. I roto i te take o Charlie, hei tauira, ka anga ratou ki te puta, ka ko te tamaiti he torutoru anake wiki. Ano, tamariki e mamae i tenei huru te tikanga e kore e taea e ki te ora kei valevalé. E ai ki te rangahau i roto i te tau 2008, e whitu ngā tamariki ki te syndrome taua rite Charlie, mate noa i mua i tae ratou i te tau o te 4 marama.

Kia aroha mai, tenei syndrome mahu. Ko te mea anake e taea te hanga tākuta - ko ki te whakarato i te tautoko mō te supply whakamahi o te mea powhiriwhiri ranei ki te āwhina ki te manawa.

Kia tumanako ahau mo te maimoatanga whakamātau

hiahia ngā mātua o Charlie ki te tamata i te maimoatanga whakamātau i runga i tana tama - therapy nucleoside ki te rauemi DNA e kore e taea te hanga o ona pūtau. Kua ano ki te kia whakapumautia te whai huatanga o tenei maimoatanga, ahakoa i mua i whakamahia ai mō ngā tūroro e kua tukua i ngā puka iti nui o te mate, e mohiotia ana ko TK2 irakētanga. Heoi, e kore kua te therapy i whakamahia mō te tūroro ki irakētanga RRM2B. takoha Ahakoa te tākuta nei i rite ki te āwhina i te Garda ki te maimoatanga whakamātau tuatahi, a muri mai i ki whakaae e tenei therapy he kāore ki te whakaora Charlie, rite te tamaiti kei roto i te wāhanga i muri mai o te mate.

Aita i maoro a'e, kua whakaarohia māngai o Hospital o te tamariki i roto i Itari ki te neke Charlie ki a ratou ki te whakarato i te tiaki e tika ana mo ia, heoi kihai London Hospital tākuta ki te rave i te reira, tautāwhi take ture. Boris Johnson, ko wai te mea te Minita o Aorere o Great Britain, ka mea ano hoki e "Ko rite ki te whakaaro hauora mohio, e tautokona ana e te marae tenei whakatau", e ka tango ki te whakaaro tuatahi o nga ngākau nuitanga o te tamaiti.