UNicholas (isifo sesifo sokugula)

UNicholas wafunyaniswa ukuba unesifo serhengulu emva nje kokuba ezelwe. Wayekhathazwa sisifo seenyawo ezinyaweni xa wayelusana (“Wayekhala aze ajikeleze kakhulu ngenxa yeentlungu ezisezandleni nasezinyaweni zakhe,” ukhumbula umama wakhe, uBridget) kwaye wakhutshwa inyongo kunye nodakada eneminyaka eyi-5. kunye namanye amayeza amncedile yena nosapho ukuze bakwazi ukulawula ukugula kunye neentlungu ezinzima ezinokubangela ukulaliswa esibhedlele. Ngoku eyi-15 kwaye ungumfundi obekekileyo esikolweni, uNicholas uyakonwabela "ukuzihlalela", emamele umculo, edlala imidlalo yevidiyo, ejijisana kwaye efunda ijujitsu yaseBrazil.

UNicholas uthathe inxaxheba kuvavanyo lwakhe lokuqala lwezonyango malunga neminyaka emithathu edlulileyo. Kwajongwa ubudlelwane phakathi kokuzilolonga kunye nesifo selebheli.

"Omnye wee-hematologists esibhedlele esiye saqaphela ukuba uNicholas sisigulana esisebenzayo se-sickle cell," ukhumbula oko uBridget. “Usemidlalweni, kwaye unehydroxyurea engekho esibhedlele njengokuba wayeqhele ukuba njalo. Ke basibuze ukuba singasenza na isifundo ukumjonga ukuphefumla kwakhe. Ndibuzile, ngaba kukho naziphi na izinto ezimbi kuye? Kwaye ekuphela kwento akuyo ukuba wayeza kuphelelwa ngumoya, uyazi. Ndabuza ke uNicholas ukuba kulungile kwaye wathi ewe. Kwaye sithathe inxaxheba kuyo. Nokuba yintoni enokubanceda bafunde banzi ngesi sifo, sonke sinaso. ”

Nangona isifundo besingacetyelwanga ukuphucula impilo yabathathi-nxaxheba, bobabini umama nonyana bonwabile ngokuthatha kwabo inxaxheba kunye nethuba lokunceda ukuqhubela phambili ulwazi lwenzululwazi malunga nesi sifo.

Ukuthatha inxaxheba kwezi zifundo, ndicinga ukuba kuyabanceda oogqirha baqonde ngakumbi ngesi sifo kwaye, uyazi, baphume namayeza amaninzi kwaye bancede wonke umntu onaso, utshilo uNicholas. "Ke iintsapho zabo kunye nabo abayi kuba, uyazi, kwiintlungu zentlungu okanye esibhedlele."

Emva kwamava osapho afanelekileyo kwisifundo, kwi-2010 uNicholas uthathe inxaxheba kwityala lesibini leklinikhi. Lo wafunda umsebenzi wemiphunga kulutsha olunesifo selebheli.

UBridget uthi: “Wayekhwela ibhayisekile emile, ejonge kuye. Kwaye bafuna ukuba ahambe ngokukhawuleza kwaye emva koko athobe isantya. Kwaye uhambe ngokukhawuleza kwakhona. Uphefumle kumbhobho. Kwaye batsala igazi lakhe ukuze bavavanywe. Akubangakho kuphucuka kwimpilo yakhe, ibikukubona nje indlela umntu oneseli lerhengqa asebenzayo, uyazi, ukuba unjani umsebenzi wemiphunga. ”

Ngokufana novavanyo lokuqala, isibonelelo sokuthatha inxaxheba khange sibe sesikaNicholas ngokobuqu kodwa ukunceda oogqirha nabaphandi bafunde ngakumbi ngesifo serhengqa.

UNicholas uthi, “Ndiyathemba ukuba oogqirha bazakufumana konke abanako malunga neseli yerhengqa, kuba inganceda izigulana zeeseli zeerheng kunye neentsapho zazo, uyazi, zingabikho esibhedlele kangako. Ukwazi ukwenza le nto bayenza ngaphezulu, ukuhlala ubomi obuqhelekileyo kunye nokuqhubeka neeshedyuli zabo endaweni yokuthatha ikhefu lokuya esibhedlele kwaye, uyazi, badlule kuyo yonke le ntlungu, izinto ezinjalo. ”

UBridget noNicholas bahlala bevulelekile ekuthatheni inxaxheba kuvavanyo lweklinikhi ngakumbi ngelixa bethathela ingqalelo ukonwaba kwabo njengentsapho.

"Ndicinga ukuba abanye abantu kufuneka bayenze [bathathe inxaxheba kuphando lweklinikhi] okoko bengaziva ngathi akukho siphumo sibi, utshilo. Ndiyathetha, kutheni? Ukuba kuyanceda ukwenza iihematologists bazi ngeseli erhengayo ngendlela eyahlukileyo, ndiphelele kuyo. Sonke sinalo. Sifuna ukuba bazi kangangoko banako ngeeseli zerhengqa. ”

Iveliswe kwakhona ngemvume evela. I-NIH ayikhuthazi okanye icebise nayiphi na imveliso, iinkonzo, okanye ulwazi oluchazwe okanye olunikezelwa apha yi-Healthline. Iphepha lokugqibela liqwalaselwe ngo-Okthobha 20, 2017.