Pamene tikuyembekezera mwana, timadandaula, timaganizira za matenda, kulumala, ku imfa mwangozi nthawi zina. Ndipo ngati ndikanakhala ndi mantha, sindinaganizirepo za matendawa, chifukwa mwachiwonekere sindimadziwa. Zoti mwana wanga wamkazi woyamba, Ornella wanga wamng'ono wokongola yemwe ali ndi zaka 13 lero, akhoza kudwala matenda osachiritsika sizinamveke. Matendawa achita ntchito yake. Tsiku lina, pamene anali ndi zaka 4, tinapeza kuti anali wobisika ndipo anasiya kulankhula. Mawu ake omaliza anali funso kwa Gadi, bambo ake. Chiganizo ichi chinali: "Amayi alipo?" “. Iye anali adakali nafe panthaŵiyo.
Pamene ndinali ndi pakati pa Ornella, sindinkadzimva kukhala wotoperedwa kapena wosimidwa kwenikweni. Ndidakhala ndi zododometsa zingapo zazikulu, pomwe ultrasound, mwachitsanzo, idawulula khosi lalitali pang'ono, ndiye kuti matenda a Down's syndrome sanathe. Phew, mwina ndimaganiza, pamene matenda oyipa kwambiri anali atameza kale mwana wanga. Lero, ndikuwona ngati chizindikiro kusowa kopepuka komanso kusakhalapo kwa chisangalalo chenicheni panthawi yapakati. Ndinkaona kutalikirana ndi amayi omwe amawerenga mabuku a ana ndikukongoletsa zipinda zazing'ono mu euphoria… Ndimakumbukirabe nthawi yogula zinthu ndi amayi anga ndikugula nsalu za beige zodzaza ndi njuchi.
Nkhondo ya Karen idalimbikitsa kanema wapa TV, "Tu vivras ma fille," yomwe idawulutsidwa pa TF1 mu Seputembala 2018.
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Posakhalitsa ndinabereka. Ndiyeno, mwamsanga ndithu, pamaso pa mwana uyu amene analira kwambiri, amene ndithudi sanapange usiku wake, Ine ndi Gadi tinali ndi nkhawa. Tinapita kuchipatala. Ornella adadwala "chiwindi chochuluka". Kuwunika. Mwamsanga, kunali koyenera kupanga mayeso owonjezera omwe anatsogolera ku chigamulo. Ornella amadwala “matenda ochulukitsitsa”, matenda a Sanfilippo. Atatha kufotokoza zomwe ayenera kuyembekezera, dokotalayo adalankhula za moyo wake wazaka khumi ndi ziwiri mpaka khumi ndi zitatu, ndi kusowa kwathunthu kwa chithandizo. Pambuyo pa kugwedezeka komwe kunatifafaniza, sitinadzifunse kuti tiyenera kukhala ndi maganizo otani, tinatero.
Ndi chifuno chonse padziko lapansi, tinaganiza zopeza mankhwala kuti tipulumutse mwana wathu wamkazi. Pamakhalidwe, ndinasankha. Moyo pafupi ndi “uwo” unalibenso. Ndakhala ndikulumikizana ndi anthu omwe angandithandize kumvetsetsa matenda osowa. Ndinafika pafupi ndi gulu loyamba lachipatala, kenako gulu la asayansi la ku Australia… Tinapinda manja athu. Mwezi ndi mwezi, chaka ndi chaka, tinkapeza anthu ochita masewera a boma ndi apadera omwe angatithandize. Iwo anali okoma mtima moti anandifotokozera mmene ndingapangire mankhwala, koma palibe amene anafuna kuloŵa m’ndondomeko imeneyi ya chithandizo cha matenda a Sanfilippo. Ziyenera kunenedwa kuti ndi matenda omwe nthawi zambiri amawadziwa bwino, kuti pali 3 mpaka 000 milandu ku Western world. Mu 4, mwana wanga wamkazi ali ndi chaka chimodzi, ndinapanga bungwe, Sanfilippo Alliance, kuti abweretse mawu a mabanja a ana omwe akhudzidwa ndi matendawa. Ndi mwanjira iyi, atazunguliridwa ndikuzunguliridwa, kuti nditha kuyesa kukhazikitsa pulogalamu yanga, kutsatira njira yanga yopita ku chithandizo. Ndiyeno ndinakhala ndi pakati pa Salomé, mwana wathu wamkazi wachiŵiri amene tinali kumufuna kwambiri. Ndikhoza kunena kuti kubadwa kwake kunali nthawi yosangalatsa kwambiri kuyambira pamene matenda a Ornella analengeza. Ndidakali m’chipinda cha amayi oyembekezera, mwamuna wanga anandiuza kuti € 000 yagwera m’nkhokwe ya chuma cha bungwe. Zoyesayesa zathu zopezera ndalama zinapindula! Koma pamene tinali kufunafuna yankho, Ornella anali kutsika.
Mogwirizana ndi dokotala, ndinatha, kumayambiriro kwa chaka cha 2007, kukhazikitsa pulojekiti yothandizira jini, kupanga pulogalamu yathu, kupanga maphunziro oyenerera a preclinical. Zinatenga zaka ziwiri za ntchito. Pakukula kwa moyo wa Ornella, zikuwoneka motalika, koma tinali othamanga kwambiri.
Pamene tinkayamba kukopana ndi zowawa za mayesero oyambirira azachipatala, Ornella anakananso. Izi ndi zowopsa pankhondo yathu: zikhumbo zabwino zomwe amatipatsa zimathetsedwa ndi zowawa, maziko achisoni omwe timamva ku Ornella. Tidawona zotsatira zabwino mu mbewa ndipo tidaganiza zopanga SanfilippoTherapeutics yomwe idakhala Lysogene. Lysogene ndi mphamvu yanga, nkhondo yanga. Mwamwayi, maphunziro anga ndi zochitika zomwe ndinapeza pa moyo wanga woyamba wa ntchito zinandiphunzitsa kudziponya ndekha ndikugwira ntchito pazinthu zovuta, chifukwa gawo ili silinali lodziwika kwa ine. Komabe tatsitsa mapiri: kwezani ndalama, ganyu magulu, zungulirani ndi anthu abwino ndikukumana ndi omwe akugawana nawo oyamba. Chifukwa inde, Lysogene ndi gulu lapadera la luso lapadera lomwe, onse pamodzi, akwaniritsa luso lotha kuyambitsa mayesero achipatala oyambirira ndendende zaka zisanu ndi chimodzi chilengezo cha matenda a mwana wanga wamkazi. Pakalipano, chirichonse chinalinso chikuyenda mozungulira ife pamlingo waumwini: nthawi zambiri tinkasuntha, kusintha gulu lapakhomo nthawi iliyonse yomwe kunali kofunika kusintha zinthu kuti Ornella kapena mlongo wake wamng'ono aziyenda bwino. Salome. Ndikulimbana ndi kupanda chilungamo, ndipo Salomé amatsatira. Salome anachitenga ndikuchipirira. Ndimamunyadira kwambiri. Iye akumvetsa, ndithudi, koma ndi kupanda chilungamo kwake kuti iye ndithudi amve kuti akutsatira. Ndikudziwa zimenezo ndipo ndimayesetsa kulinganiza mmene ndingathere, ndi kutipatsa nthaŵi yochuluka monga momwe ndingathere kaamba ka tonse aŵiri, nthaŵi imene mlongo wanga wamng’ono angaone mmene ndimamkonderanso onse. Gulu lamavuto la Ornella limatizungulira ngati chifunga, koma timadziwa kugwirana chanza.
Chiyeso choyamba chachipatala, mu 2011, chinalola kuyendetsa mankhwala opangidwa. Ntchito yomwe yachitika komanso kupambana kwake ndi yofunika chifukwa ambiri amvetsetsa kuti ikhoza kukhala yothandiza pa matenda ena amitsempha yapakati. Kafukufuku amasamutsidwa. Izi ndizosangalatsa kwa osunga ndalama ... Cholinga chathu ndikutha kuchepetsa matendawa. Chithandizo choyesera cha 2011 chinapangitsa kale kukhazika mtima pansi ndikuletsa kusokonezeka komanso kusokonezeka kwa kugona komwe nthawi zina kumalepheretsa ana kugona kwa masiku angapo motsatizana. Chithandizo chathu chatsopano, champhamvu kwambiri chiyenera kuchita bwino kwambiri. Ornella anali ndi mwayi wake, ndipo ndiyenera kumuwona akusweka. Koma kumwetulira kwake, kuyang'anitsitsa kwake kumandichirikiza, pamene tikuyambitsa kuyesa kwathu kwachipatala kwachiwiri, ku Ulaya ndi USA; ndikupitiriza ntchito yathu ndi chiyembekezo chosintha miyoyo ya odwala ena ang'onoang'ono, omwe anabadwa ngati Ornella ndi matendawa.
Ndithudi, ine nthawizina sindimamvetsedwa bwino, mpira wakuda, kuzunzidwa ngakhale, mu misonkhano yachipatala; kapena kunyalanyazidwa ndi makampani obwereketsa nyumba omwe savomereza makonzedwe oyenera a moyo wa mwana wanga wamkazi. Umu ndi momwe. Ndine womenya nkhondo. Chomwe ndikudziwa, chowonadi, ndikuti tonse tili ndi kuthekera, kaya tikulota, kumenya ndewu zoyenera.