Mai vemusikana ane rare syndrome vanopererwa kana vachitukwa nekutsvinyirwa
Iyi inyaya yaamai vane rudo avo vaifanira kutarisana nokusarurwa nenzanga ichiri kutadza kubvuma kuberekwa kwevana vakasiyana, vakasiyana. Mai ava vakabereka mumwe mwana ane chirwere chisingawanzoitiki uye kubva pakuberekwa, munguva inofadza zvikuru, aifanira kutarisana neruvengo rwevanhu vasina hanya.
Kuva mubereki a mwana akasiyana, ungave une chirwere kana kuti urema, chinogona kuva chiitiko chikuru zvakaoma uye zvinorwadza. Kuwanikwa kwechirwere ichi kunogona kukonzera kuvhunduka, kusuruvara, kuvhiringidzika uye pfungwa yekushaya rubatsiro. Mubereki haangotarisana neizvi chete zvinosuruvarisa, asi zvakare mashoko asina tsitsi yevanhu, vasingakwanisi kunzwa tsitsi.
Eliza ndiamai vaida kuudza nyaya yake, nemoyo mumaoko, kunge munhu apererwa chema kuti ubatsirwe. Kubva paakazvarwa mwanasikana wake haana chaakambosangana nazvo kunze kwekurambwa, rusarura uye zvitarisiko zvisina kunaka. Nguva yake yekufara yakashanduka kuita kuchema kwemarwadzo.
Mukadzi aida ipa inzwi kuna vanaamai vose vakarongerwa kuva vega chete nokuti vanotakura mimba isina kukwana, iyo isingawire pasi zvinofungidzirwa zvinotarisirwa nenzanga, zvinongokwanisa kutarisa kunze chete.
Kuberekwa kwaBella, mwana ane Treacher Collins syndrome
Aska gravidanza kuna Eliza nemurume wake, kwaive kupedzisa kwehope dzerudo dzakamirirwa kwenguva refu. Asati aberekwa mwana, vaviri vacho vaifungidzira, vakafungidzira somatic features, kufanana, muchidimbu, vakazvibata sevakaroorana vanofara vakamirira nguva yekugamuchira chibereko cherudo rwavo.
Asi mwedzi mumwe chete asati aberekwa, Eliza anoputsa mvura, mwana akanga asati agadzirira kuberekwa, asi zvinosuruvarisa kuti chimwe chinhu chakanga chisina kunaka uye zvakadaro 12 maawa ipapo Bella akabva azvarwa. Mwana aiva early, aive a nzeve yakakotama uye somatic maficha akasiyana kubva kumazinga. Hapana kana mumwe wevaivepo akamurumbidza, kunyangwe murume wacho akamira akanyarara achitya.
Vanachiremba vakabva vamuudza kuti kaBella kake kaizoda kutarisirwa kwakakosha. Uko munhu wese akaona chimwe chinhu chakaipa akaona rudo, rudo rukuru rwaakambonzwa.
Mushure mekushanyirwa kusingaperi musikana mudiki akabatwa aine chirwere Treacher Collins Syndrome, chirwere chenhaka chinokanganisa mapfupa nematishu echiso uye zvinozoita kuti uitwe maoparesheni akasiyana siyana.
Eliza nemurume wake vanoita nepavanogona napo kuti vape Bella mudiki hupenyu hwakanaka uye hune chiremera, vanongotarisira kuti kuchema kwavo kuchanzwiwa uye kushumirwakusimudzira ruzivo vanhu uye kubatsira mhuri dzese dzine mwana akakosha kuwana rutsigiro kubva kumasangano.