Ngano dzemhuri dziri kurwisana nechirwere chisingawanzoitiki: Rwendo rwetariro (Chirwere Chisingawanzoitiki)

Fungidzira, mwana wako mudiki ari kunyemwerera, kumhanya uye kutamba. Uri kutarisa nemufaro nhanho imwe neimwe yekukura kwake. Paunenge uchifunga kuti zvese zvakanaka, kamwe kamwe kufamba kwake kunochinja, anotanga kuwa kakawanda. Kuona chimwe chinhu chakadai kwaizotyisa chero amai kana baba, handiti? Izvi ndezvemhuri shoma dzisina kumborasa tariro kunyangwe dzichisangana nechiitiko chinoshungurudza zvakadaro. Nyaya dzavo dzinotidzidzisa zvakawanda.

Nyaya ya "Will": Zuva Rakachinja Zvinhu Zvose

Will mukomana mudiki ane hunhu hwakaipa, anoshanda nesimba, uye ane ushamwari. Sekureva kwaamai vake, Casey, zvese zvakakosha mukukura kwake zvakaitika panguva chaiyo. Will paakanga ava nemakore maviri, aifamba uye achitamba zvakanaka, asi pasina chikonzero chakajeka, akatanga kudonha kakawanda. Rimwe zuva, akangoerekana adonha.

Kubva pazuva iroro zvichienda mberi, hutano hwaWill hwakatanga kuipa nekukurumidza. Mushure mekuongororwa kakawanda, vanachiremba vakazopedzisira vaona kuti Will aive nechirwere chisingawanzoitiki. Chirwere ichi chainzi `Leigh syndrome` .

Zvichitaurwa zviri nyore, sero rega rega mumuviri wedu rine magwenya mashoma anonzi mitochondria anopa simba. Muchirwere ichi chisingawanzoitiki chinonzi Leigh syndrome, nzvimbo idzi dzinogadzira simba hadzishande zvakanaka nekuda kwekuchinja kwemajini. Will akachinja mune rimwe remajini iwayo, rinonzi SURF1. Chirwere ichi ndecheboka guru rezvirwere zvinonzi mitochondrial diseases.

Casey anoyeuka nguva iyoyo nemanzwiro makuru. "Yaiva nguva yakaoma zvikuru muhupenyu hwedu. Kunyange zvazvo mumwe wevana vangu aisagona kufamba, mumwe mwana wangu aidzidza kufamba." Fungidzira kuti amai ivavo vanofanira kunge vakanzwa sei.

Hondo inopfuura kuva mubereki

Izvi pazvakaitika kumwana wavo, Casey nemurume wake, Doug, havana kungogara pasi vachitarisa. Vakatanga kutsvaga zvese zvavaifanira kuziva nezvechirwere ichi. Sezvinotaurwa naCasey, "Paunonzwa nezvechirwere chisingawanzoitiki chakadai, unonzwa sekunge hupenyu hwako hwese huri kuparara pamberi pako... uye wobva wadzidza zvese zvaunofanira kuziva nezvechirwere chemwana wako. Zvakafanana nekuenda kuchikoro chekurapa wotora kosi itsva."

Pavakaona kuti ruzivo nezvechirwere ichi rwaive rushoma uye zviwanikwa zvishoma, vakabatana nedzimwe mhuri dzine vana vane chirwere chakafanana ndokutanga "Cure Mito Foundation." Chinangwa chesangano iri chaive chekubatsira kuwana mushonga weLeigh syndrome.

Tarisa matambudziko anosangana nevabereki vakaita seava uye basa guru ravanoita.

"Sophia" uyo akashandura kurwadziwa kuita simba

Nyaya yaamai vanonzi Sophia Silber ine chekuitawo neizvi. Iye zvakare ari mubhodhi revatungamiriri ve'Cure Mito' Foundation. Makore matanhatu apfuura, mwanasikana wake mudiki Miriam, mavhiki mashoma mushure mekuzvarwa, akafa ne'Leigh syndrome'. Kushamisika kwerufu irworwo rwakangoerekana rwaitika, rwaisatarisirwa kwaive kukuru zvekuti Sophia anoti chiitiko ichi chakakamura hupenyu hwavo kuita zvikamu zviviri: 'pamberi' uye 'pashure'. "Shoko rega rega, miniti yega yega yenguva iyoyo inogara iri mumoyo medu," anodaro.

Asi haana kugumira ipapo. Akashandisa ruzivo rwake rwehunyanzvi (kuongorora data rekuyedzwa kwekiriniki) kugadzira gwaro revarwere raizounganidza ruzivo nezvevarwere vane chirwere ichi pasi rese. Akazvipira kushanda zviuru zvemaawa pakuita izvi.

Sei kunyoreswa kwevarwere kwakadai kuchikosha?

Fungidzira, nekuti zvirwere izvi hazviwanzoitiki, hapana chiremba mumwe chete achasangana nevarwere vakawanda vakaita seizvi. Saka ruzivo rwakanakisisa nezvekukura kwechirwere, maitikiro acho, uye kuti zviratidzo zvinoshanduka sei rwuri kuvarwere nemhuri dzavo. Kana ruzivo urwu rukaunganidzwa panzvimbo imwe chete, runova chinhu chinokosha kune vaongorori vari kutsvaga mishonga mitsva. Runovhura nzira yekurapa kutsva.

Nhaka yeTariro

Ngatidzokerei kunyaya yaWill. Nhasi, Will ava nemakore gumi nerimwe ekuberekwa. Kunyange hazvo asingakwanise kufamba, kutaura, kana kudya nemuromo, mamiriro ake ezvinhu akagadzikana. Chinonyanya kukosha ndechekuti pfungwa dzake dzichiri dzakanaka. Amai vake vanoti anonyanya kufarira sainzi. Paakaita vhidhiyo nguva pfupi yadarika, akanyemwerera ndokusimudza chigunwe chake kuti asimbise izvi.

Sangano reCure Mito Foundation, rakatangwa nevabereki vaWill, ikozvino riri kutsigira kurapa majini uye kutsvaga mishonga yakasiyana-siyana kuti vaone kana mimwe mishonga iripo inogona kushandiswa kurapa chirwere ichi.

Izvi zvinoreva kuti zvatinoita muzita raWill zvinogona kuponesa hupenyu hwemumwe mwana ane chirwere ichi mune ramangwana. Ndiyo nhaka yaanosiya. Nyaya idzi dzinotiudza kuti zvisinei nekuti mamiriro acho ezvinhu akaoma sei, kana tikabatana toshanda netariro, tinogona kuita mutsauko mukuru. Kurwira kuri kurwirwa nevabereki ava nekuda kwemwana wavo kuri kugadzira ramangwana rezviuru zvevamwe vana.