xhosa.173.tumour e
Abemi beli abakhathalayo
kubhale uRIOT HLATSHWAYO noPATRICIA McCRACKEN
kufote uZENZELE KUHLASE/AENS
UMUXE Nkuna one-13 leminyaka ubudala wakhwel' inqwelo-ntaka okokuqala ebomini bakhe entingela eRhawutini enethemba lokutshintsha kobomi bakhe.
Usahleli kwelo themba nangoku...
Ingcali zoogqirha ePretoria Academic Hospital zafumanisa ukuba kungabek' ubomi bakhe esichengeni ukutyanda idolo lakhe elikhulayo.
UMuxe uphethwe sisifo ekuthiwa yineurofibromatosis, ekusisifo esibuhlungu esenza kukhule amathumba amancinci kwiiseli zemithambo-luvo. Ayabonakala xa engaphantsi kolusu kodwa avela naphi na emzimbeni.
"Bathi oogqirha esi sifo sele sinwenwele nasemnqonqweni wakhe. Loo nto ithetha ukuba angaba yingxwelerha - okanye angafa xa enokutyandwa," utsho uSamki Phenyane ongusomashishinikazi owafunda ngentlungu kaMuxe kwiphepha-ndaba lasekuhlaleni waza wazibophelela ekumncedeni. Wakhuph' imali yokuthenga amayeza aza kuphelis' iintlungu anciphise nokukhula kwethumba.
UMuxe uhlala kwilali yaseCalcutta eBushbuckridge emazantsi eLimpopo. Kwiindawo ahambe kuzo ububonil' ububele babantu. Bathi oogqirha baseNelspruit Medi-Clinic besakufumanis' ukuba uPhenyane uyanceda bathi makangabahlawuli.
"Ndinabantwana abathathu - intombi noonyana ababini, bonke bangaphantsi kweminyaka esibhozo - ngoko ndathi xa ndibona ifoto yale nkwenkwana ndalusizi ndaza ndabon' ukuba abemi beloMzantsi Afrika ngathi ababancedi ngokwaneleyo abantu.
"Le nto ndiyenzayo iza kwenz' umahluko kule nkwenkwana, usapho, iititshala nabahlobo bayo," utshilo uPhenyane.
"Lubanzi uphando olwenziwayo ngesifo sikaMuxe," utsho uGqr. Doron Frantzen, oyingcali yezifo zamathambo ePretoria Academic Hospital osele ethethe noogqirha baseMelika ngesi sifo.
"Likho ithemba lokuba lungavela unyango.
"Ngokokwazi kwethu imeko yakhe inik' umceli-mngeni omkhulu koogqirha. Ithumba lakhe lisuka edolweni liye kumthambo-luvo wesinqe - wona osuka eqatheni uye kufikelela emnqonqweni.
"Soyikisela ukuba kungenzeka kuthi kanti la mathumba azele kuyo yonk' imithambo-luvo nto leyo eza kwenza ukuba xa siwatyanda sikhuphe nemithambo-luvo eza kushiy' unyawo lwakhe lungasebenzi."
Ithumba elilolu hlobo lizele igazi yaye xa lityandwa lopha kanobom. Eziny' izigulana ziye ziphulukane neelitha zegazi ezine okanye ezintlanu ezinye ziye zisweleke.
"Into engenziwa kuMuxe kukuba kunqunyulwe umlenze wonke. Emva koko asoze akwazi ukuhamba kakuhle ukanti kukho noloyiko lokuba esi sifo sinwenwele nasemnqonqweni wakhe - yaye asoze uwukhuphe umnqonqo," kuchaza uGqr. Frantzen.
"Andizi kuyeka ukuzingelel' uMuxe uncedo," utsho uSamki. Ngethuba sishicilela eli nqaku ubesele evile ngenkqubo ehlolwayo eBrazil wathi usaza kuthetha ngayo noGqr. Frantzen.
Unina kaMuxe owashiywa nabantwana abasixhenxe nabazukulwana ababini ngumyeni wakhe osweleke ebutsheni balo nyaka ubulele wadomboza kumaSamariya alungileyo anceda yena noMuxe ukuze basazi esi sifo simphetheyo.
Usakhumbula ngethuba uMuxe eneminyaka emithathu kodwa engekahambi. Imali kayise yomhlala-phantsi yaphelela kuye bemhambisa ezibhedlele befun' uncedo kodwa kungekho mntu ubancedayo. Babexelelwa ukuba akukho nto iza kwenziwa ukumnceda.
UMuxe uthi unqwenela ukuba ngugqirha ukuze ancede "abantu abagulayo."
BONA XHOSA - October 2005
EKUNENE: UMuxe nosomashishinikazi uSamki Phenyama owazibophelela ekumncedeni esakuba efunde ngentlungu yakhe kwiphepha-ndaba lasekuhlaleni.
Ithumba elikhulayo
NGASENTLA: UMuxe nonina uMalumane besekliniki.
UMuxe Nkuna akanakutya-ndwa kuba isifo sakhe sinobunzulu kodwa ubonil'ukuba abantu banobubele
BONA XHOSA - October 2005
'Sonke sisesichengeni'
Ineurofibromatosis (NF) isisifo esixhaphakileyo esichaphazela imithambo-luvo, kutsho iChildren's Tumor Foundation eseUS.
I-NF iyavela nakuluphi na usapho. Ikho kwihlabathi jikelele, ichaphazela amabhinqa namadoda ngokulinganayo yaye ayikhethi kuthi ululuphi na uhlanga okanye uhlala endaweni enjani.
Siziindidi ezintathu - iHarvard Medical School yaseUS ithi, mnye umntu kwabangama-3 000 oneyona NF1 ixhaphakileyo efana nekaMuxe Nkuna.
Malunga nesiqingatha sabo baneNF1 bayifumene emzalini kuba makhulu amathuba okuba umzali amosulele umntwana. Kodwa esinye isiqingatha asinamzali onayo - ngenxa yokuba kuthiwa iyakwazi ukuveza umlibo oguqulelweyo. I-NF ayibonakali njenge-elephantiasis, kodwa yona isasazwa yincukuthu noxa zingathi ziyafana nje ezi zifo.
Ineurofibroma ayinantlungu ngaphandle kokuba ithunukiwe okanye xa kukho imithambo-luvo echaphazelekayo njengakuMuxe. Umntwana oneNF1 akafuni kuphathwa okomntu ogulayo okanye into e-ethe-ethe yaye nabantu abadala abanayo abanazingxaki zempilo yaye bayatshata babe nabantwana, baphangele.
Esi sifo asinabungozi kangako kodwa singamenza umntu abe namalungu angasebenziyo, amfameke, abe sisithulu, abe nengxaki yamathambo, ulusu, ingqondo, abe namathumba emnqonqweni, anqunyulwe amalungu omzimba kungenjalo abe neengxaki zokufunda. Abantu abaneNF baba bafutshane kuneentanga zabo baze babe neentloko ezinkulu.
I-NF yenza ube noxinzelelo ube lilolo - xa unayo okanye kukh' umntu omaziyo onayo mcele ukuba azibandakanye neqela elikhuthaza iingxwelerha okanye avule ezi Website zaphesheya:
www.understandingnf1.org
www.nfinc.org
www.ctf.org
nguPatricia McCracken [x]
