Umama wentombazane ene-rare syndrome uphelelwa ithemba lapho ethukwa futhi egconwa

Lena indaba kamama onothando okwadingeka abhekane nokucwaswa emphakathini ongakakwazi ukwamukela ukuzalwa kwezingane ezihlukile, ezikhethekile. Lomama wazala oyedwa ingane nge-syndrome engavamile futhi kusukela ekuzalweni, ngesikhathi esijabulisa kakhulu, kuye kwadingeka abhekane nokuziphatha okunenzondo kwabantu abangenaluzwela.

Ukuba umzali a ingane ezahlukene, kungakhathaliseki ukuthi uyagula noma ukhubazekile, kungaba okuhlangenwe nakho kakhulu kunzima futhi kubuhlungu. Ukutholakala kwalesi sifo kungabangela ukushaqeka, ukudabuka, ukukhungatheka kanye nomuzwa wokungabi nakuzisiza. Umzali akabhekene nalokhu ngeshwa kuphela, kodwa futhi amazwana angenasihe kwabantu, abakwazi ukuzwa uzwela.

Eliza ngumama owayefuna ukutshela indaba yakhe, enenhliziyo esandleni, cishe njengendoda ephelelwe ithemba akhale acele usizo. Selokhu yazalwa indodakazi yakhe akakaze ahlangane nayo ngaphandle kokwaliwa, ukucwaswa nokubukeka kabi. Isikhathi sakhe senjabulo saphenduka isililo sobuhlungu.

Owesifazane wayefuna khipha izwi kubo bonke labo omama abamiselwe ukuba bodwa kuphela ngoba bethwele isisu esingaphelele, esingangeni phakathi izinkolelo-ze elindelwe umphakathi, ekwazi ukubuka ingaphandle kuphela.

Ukuzalwa kukaBella, ingane ene-Treacher Collins syndrome

I-Questa sokukhulelwa ku-Eliza nomyeni wakhe, kwakuwukufezeka kwephupho lothando ebelilindelwe isikhathi eside futhi elifiswayo. Ngaphambi kokuzalwa kwengane, lo mbhangqwana waphupha, ucabange izici ze-somatic, ukufana, ngamafuphi, baziphatha njengombhangqwana ojabulisayo olindele isikhathi sokwamukela isithelo sothando lwabo.

Kodwa inyanga ngaphambi kokuzalwa, u-Eliza ephula amanzi, ingane yayingakakulungeli ukuzalwa, kodwa ngeshwa kukhona okwakungalungile futhi kanjalo Amahora we-12 kwase kuzalwa uBella. Ingane yayinjalo kusenesikhathi,wabe a indlebe egobile kanye nezici ze-somatic ezihlukile kumazinga. Akekho noyedwa kwababekhona owamncoma, ngisho umyeni wayemile ethukile.

Odokotela babe sebemtshela ukuthi uBella wakhe omncane uzodinga ukunakekelwa okukhethekile. Lapho wonke umuntu ebone okuthile okungalungile wabona uthando, uthando olukhulu kunawo wonke angake aluzwe.

Ngemva kokuvakasha okungapheli le ntombazanyana yatholakala inalo I-Traacher Collins Syndrome, isifo esiwufuzo esithinta amathambo nezicubu zobuso futhi esizoholela ekuhlinzweni okuhlukahlukene.

U-Eliza nomyeni wakhe benza konke okusemandleni abo ukunikeza uBella omncane impilo ejwayelekile futhi ehloniphekile, bathemba nje ukuthi ukukhala kwabo kuzozwakala futhi bakhonzeukuqwashisa abantu kanye nokusiza yonke imindeni enengane ekhethekile ukuze ithole ukwesekwa ezikhungweni.