Lapho silindele umntwana, siyakhathazeka, sicabanga ngokugula, ukukhubazeka, ukufa ngengozi ngezinye izikhathi. Futhi uma nginokwesaba, angizange ngicabange ngalesi sifo, ngoba ngokusobala ngangingazi. Ukuthi indodakazi yami yokuqala, u-Ornella wami omncane omuhle oneminyaka engu-13 namuhla, angase aphathwe isifo esingelapheki kwakungezwakali. Lesi sifo siwenzile umsebenzi waso. Ngolunye usuku, lapho eneminyaka engu-4 ubudala, sathola ukuthi wayecashile futhi engasakwazi ukukhuluma. Umusho wakhe wokugcina kwaba umbuzo kuGadi, uyise. Lo musho wawuthi: “Umama ukhona?” “. Wayesahlala nathi ngaleso sikhathi.
Lapho ngikhulelwe u-Ornella, angizange ngizizwe ngitotoswa noma ngitotoswa ngokukhethekile. Ngize ngaba nokushaqeka okukhulu okumbalwa, lapho i-ultrasound, ngokwesibonelo, yembula intamo ewugqinsi, kwase kunqunywa ukutholakala kwe-Down's syndrome. Phew, mhlawumbe ngacabanga, lapho isifo esibi kakhulu sase sishwabadela ingane yami. Namuhla, ngibona njengesibonakaliso lokhu kuntuleka kokukhanya kanye nalokhu kungabikho kwenjabulo yangempela phakathi nokukhulelwa kwami. Ngazizwa ngiqhelelene nomama ababefunda izincwadi zezingane futhi bahlobise amagumbi amancane enjabulo… Ngisakhumbula isikhashana ngithenga nomama futhi sithenga amakhethini elineni a-beige agcwele izinyosi.
Impi kaKaren igqugquzele ifilimu ye-TV, “Tu vivras ma fille,” eyadlala ku-TF1 ngoSepthemba 2018.
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Ngokushesha ngemva kwalokho, ngabeletha. Futhi-ke, ngokushesha okukhulu, phambi kwalo mntwana owakhala kakhulu, ongazange enze ubusuku bakhe, Mina noGadi sasikhathazekile. Saya esibhedlela. U-Ornella wahlushwa “ukuchichima kwesibindi”. Ukuqapha. Ngokushesha, kwakudingeka kwenziwe izivivinyo ezengeziwe ezaholela ekukhishweni kwesinqumo. U-Ornella uphethwe “isifo sokugcwala ngokweqile”, isifo sikaSanfilippo. Ngemva kokuchaza ukuthi yini okufanele ayilindele, udokotela wakhuluma ngokuphila kwakhe kweminyaka eyishumi nambili kuya kweyishumi nantathu, kanye nokushoda ngokuphelele kokwelashwa. Ngemuva kokushaqeka okwasiqeda ngokoqobo, asizange sizibuze ukuthi kufanele sibe nasiphi isimo sengqondo, senze.
Ngentando yethu yonke emhlabeni, sanquma ukuthola ikhambi lokusindisa indodakazi yethu. Ngokwenhlalo, ngakhetha. Ukuphila eduze “kwalokho” kwakungasekho. Ngixhumane nabantu kuphela abangangisiza ngiqonde izifo ezingavamile. Ngasondelana neqembu lokuqala lezokwelapha, ngase ngiba nethimba lezesayensi lase-Australia… Sagoqa imikhono yethu. Inyanga nenyanga, unyaka nonyaka, sasithola abalingisi bakahulumeni nabazimele abangasisiza. Babenomusa ngokwanele ukungichazela indlela yokuthuthukisa umuthi, kodwa akekho owayefuna ukungena kulolu hlelo lokwelapha isifo sakwaSanfilippo. Kumele kushiwo ukuthi yisifo esivame ukucatshangelwa, ukuthi kunezimo ezi-3 kuye kwezingu-000 emazweni aseNtshonalanga. Ngo-4, lapho indodakazi yami inonyaka owodwa ubudala, ngenza inhlangano, iSanfilippo Alliance, ukuletha izwi lemindeni yezingane ezihlaselwe yilesi sifo. Kungale ndlela, ngizungezwe futhi ngizungezwe, ngakwazi ukuqunga isibindi ukumisa uhlelo lwami, ukulandelela umzila wami obheke EKWETHWENI. Ngabe sengikhulelwa uSalomé, indodakazi yethu yesibili esasiyifuna kakhulu. Ngingasho ukuthi ukuzalwa kwakhe kwaba umzuzu omkhulu wenjabulo kusukela kumenyezelwe isifo sika-Ornella. Ngenkathi ngisewodini lababelethayo, umyeni wami wangitshela ukuthi u-Euro 000 uwele kumgcinimafa wenhlangano. Imizamo yethu yokuthola imali ekugcineni yaphumelela! Kodwa lapho sisajahe isixazululo, u-Ornella wayencipha.
Ngokubambisana nodokotela, ngakwazi, ekuqaleni kuka-2007, ukumisa iphrojekthi yokwelashwa kwezakhi zofuzo, ngaklama uhlelo lwethu, ngenza izifundo zokwelashwa ezidingekayo. Kwathatha iminyaka emibili yomsebenzi. Ngokwesilinganiso sempilo ka-Ornella, kubonakala kuyinde, kodwa sasishesha kakhulu.
Njengoba sidlala ngothando ngodaka lwesivivinyo sokuqala somtholampilo, u-Ornella wenqaba futhi. Yilokhu okubi kakhulu ekulweni kwethu: izifiso ezinhle abasinika zona ziqedwa ubuhlungu, lesi sisekelo esihlala njalo sokudabuka esikuzwa ku-Ornella. Sibone imiphumela ethembisayo kumagundane futhi sanquma ukwakha i-SanfilippoTherapeutics eyaba yi-Lysogene. I-Lysogene ingamandla ami, ukulwa kwami. Ngenhlanhla, izifundo zami kanye nokuhlangenwe nakho okutholwe ngesikhathi sokuphila kwami kokuqala kobuchwepheshe kwangifundisa ukuba ngiziphonse endaweni engenalutho futhi ngisebenze ezifundweni eziyinkimbinkimbi, ngoba lo mkhakha wawungaziwa kimi. Nokho sehlise izintaba: nyusa imali, qasha amaqembu, uzungeza abantu abakhulu futhi uhlangane nabanikazi bamasheya bokuqala. Ngoba yebo, i-Lysogene iyiqoqo eliyingqayizivele lamathalente avelele okuthi, bonke, bazuze ikhono lokukwazi ukuqala izivivinyo zomtholampilo zokuqala ncamashi eminyakeni eyisithupha ngemva kokumenyezelwa kwesifo sendodakazi yami. Phakathi naleso sikhathi, yonke into yayihamba nathi ngokwezinga lomuntu siqu: ngokuvamile sasihamba, sishintsha inhlangano yasekhaya noma nini lapho kudingekile ukushintsha izinto ukuze kuthuthukiswe inhlalakahle ka-Ornella noma udadewabo omncane. Salome. Ngilwa nokungabi nabulungisa, bese kulandela uSalomé. USalome uyayithatha ayibekezele. Ngiyaziqhenya ngaye. Uyaqonda, yebo, kodwa yeka ukungabi nabulungisa kuye ukuba abe nomuzwa wokulandela. Ngiyazi lokho futhi ngizama ukulinganisela ngangokunokwenzeka, futhi ngisinike isikhathi esiningi ngangokunokwenzeka ngathi sobabili, isikhathi lapho udadewethu omncane engabona ukuthi ngimthanda kangakanani futhi. Iqoqo lezinkinga lika-Ornella lisizungezile njengenkungu, kodwa siyakwazi ukubambana ngezandla ndawonye.
Ukuhlolwa kokuqala komtholampilo, ngo-2011, kwavumela ukuphathwa komkhiqizo othuthukisiwe. Umsebenzi owenziwe kanye nempumelelo yawo uyingqophamlando ngoba abaningi baye baqonda ukuthi ungaba usizo kwezinye izifo zesimiso sezinzwa esiyinhloko. Ucwaningo luyadluliswa. Lesi sici siyathakazelisa kubatshalizimali … Inhloso yethu ukuthi sikwazi ukwehlisa ijubane lesi sifo. Ukwelashwa kokuhlola kwango-2011 kakade kwenze kwaba nokwenzeka ukudambisa futhi kunqandwe ukushuba ngokweqile kanye nokuphazamiseka kokulala okuvimbela izingane ukuba zingalali izinsuku ezimbalwa zilandelana. Ukwelashwa kwethu okusha, okunamandla kufanele kwenze kangcono kakhulu. U-Ornella ube nethuba lakhe, futhi kufanele ngimbone ebhidlika. Kodwa ukumamatheka kwakhe, ukungibheka kwakhe okujulile kuyangisekela, njengoba sethula ucwaningo lwethu lwesibili lomtholampilo, eYurophu nase-USA; futhi siqhubeke nomsebenzi wethu ngethemba lokuguqula kahle izimpilo zezinye iziguli ezincane, ezizalwa njengo-Ornella enalesi sifo.
Impela, ngezinye izikhathi bengingaqondwa kahle, ibhola elimnyama, ngiphathwe kabi ngisho, emihlanganweni yezokwelapha; noma zinganakwa izinkampani eziqashisa ngamafulethi ezingawamukeli amalungiselelo adingekayo enhlalakahleni yendodakazi yami. Nansi indlela. Ngingumlwi. Engikwaziyo, ngokuqinisekile, ukuthi sonke sinamandla, noma ngabe iliphi iphupho lethu, lokulwa izimpi ezifanele.