Umama wentombazana ene-rare syndrome uphelelwa lithemba xa ethukwa yaye egezelwa
Eli libali lomama onothando ekwafuneka ajamelane nocalucalulo kuluntu olungekakwazi ukwamkela ukuzalwa kwabantwana abahlukeneyo, abakhethekileyo. Lo mama wazala omnye umntwana nge-syndrome enqabileyo kwaye ukususela ekuzalweni, ngomzuzu owonwabisayo, kwafuneka ajamelane nokuziphatha okunenzondo kwabantu abangenaluvelwano.
Ukuba ngumzali we umntwana owahlukileyo, enoba unesigulo okanye unesiphene, isenokuba ngamava amaninzi inzima kwaye ibuhlungu. Ukufunyaniswa kwesi sifo kunokubangela umothuko, usizi, ukudakumba kunye nokuziva ungenakuzinceda. Umzali akajonganga nje oku ngelishwa, kodwa kwakhona izimvo ezingenanceba abantu, abakwazi kuva novelwano.
eliza ngumama ebefuna ukuxela ibali lakhe, ngentliziyo esandleni, phantse njengendoda ephelelwe lithemba ukhalela uncedo. Oko yazalwa intombi yakhe, akafumananga nto ngaphandle kokwaliwa, ucalucalulo kunye nenkangeleko ekhohlakeleyo. Umzuzu wakhe wolonwabo wajika waba sisikhalo sentlungu.
Eli bhinqa lalifuna nika ilizwi kubo bonke oomama abamiselwe ukuba bodwa kuphela ngenxa yokuba bethwele ukukhulelwa okungagqibelelanga, okungangeni ngaphakathi iinkolelo elindelwe luluntu, ekwaziyo ukujonga umphandle kuphela.
Ukuzalwa kukaBella, umntwana one-Treacher Collins syndrome
Questa ukukhulelwa kuEliza nomyeni wakhe, yayikukufezekiswa kwephupha lothando ekudala lilindelwe kwaye linqweneleka. Ngaphambi kokuzalwa komntwana, esi sibini sasicinga, sicinge ngeempawu ze-somatic, ukufana, ngokufutshane, baziphatha njengesibini esitshatileyo esilindele ixesha lokwamkela isiqhamo sothando lwabo.
Kodwa kwinyanga ngaphambi kokuzalwa, u-Eliza uwaqhekeza amanzi, usana lwalungekakulungeli ukuzalwa, kodwa ngelishwa kwakukho undonakele yaye ngoko Iiyure ezingama-12 kwabe kuzalwa uBella. Umntwana wayenjalo kwangoko, wayene indlebe egobile kunye neempawu zesomatic ezahlukeneyo kwimigangatho. Akukho namnye kwabo babelapho owamncomayo, kwanomyeni wema ethule esoyika.
Oogqirha bamxelela ke ukuba uBella wakhe omncinane uza kuyidinga inkathalo ekhethekileyo. Apho wonke umntu wabona into engalunganga wabona uthando, olona thando wayenalo.
Emva kotyelelo olungapheliyo intombazana encinci yafunyaniswa inalo Treacher Collins Syndrome, imeko yofuzo echaphazela amathambo kunye nezicubu zobuso kwaye eya kukukhokelela ekubeni wenze utyando olwahlukeneyo.
U-Eliza nomyeni wakhe benza konke okusemandleni abo ukunika uBella omncinane ubomi obuqhelekileyo nobunesidima, banethemba nje lokuba ukukhala kwabo kuya kuviwa baze bakukhonzeukuphakamisa ulwazi abantu kunye nokunceda zonke iintsapho ezinomntwana okhethekileyo ukuba zifumane inkxaso kumaziko.