Patinenge tichitarisira mwana, tinonetseka, tinofunga nezvehurwere, kuremara, kurufu rwetsaona dzimwe nguva. Uye dai ndaitya, handina kumbofunga nezvechirwere ichi, nekuti ini ndaisazviziva. Kuti mwanasikana wangu wokutanga, Ornella wangu muduku akanaka ane makore 13 nhasi, aigona kutambura nechirwere chisingarapike zvakanga zvisinganzwiki. Chirwere chaita basa racho. Rimwe zuva, paaiva nemakore 4, takaona kuti akanga asingazivi uye akanga asisatauri. Mutsara wake wokupedzisira waiva mubvunzo kuna Gadhi, baba vake. Mutsara uyu waiti: "Amai varipo?" “. Akanga achiri kugara nesu panguva iyoyo.
Pandakanga ndiine pamuviri paOrnella, ndaisanzwa kunyanya kutsvinyirwa. Ndakatombova nekuvhunduka kukuru, apo iyo ultrasound, semuenzaniso, yakaratidza mutsipa wakakora zvishoma, ipapo kuongororwa kweDown's syndrome kwakabviswa. Phew, pamwe ndakafunga, apo chirwere chakaipisisa chave kutodya mwana wangu. Nhasi, ndinoona sechiratidzo ichi kushayikwa kwekureruka uye kusavapo kwemufaro chaiwo panguva yekuzvitakura kwangu. Ndakanzwa kuremerwa kure naamai vaiverenga mabhuku evacheche nekushongedza tudzimba tudiki mukufara… Ndichiri kuyeuka imwe nguva yekutenga naamai vangu tichitenga machira erineni ebeige akazadzwa nenyuchi.
Kurwa kwaKaren kwakakurudzira bhaisikopo reTV, "Tu vivras ma fille," iro rakaburitswa paTF1 munaGunyana 2018.
Tsvaga turera:
Pasina nguva ndakabva ndasununguka. Uye zvino, nekukurumidza, pamberi pemwana uyu akachema zvakanyanya, uyo asina kuita husiku hwake, Ini naGadhi takanetsekana. Takaenda kuchipatara. Ornella akatambura ne "chiropa chinoputika". To monitor. Nokukurumidza, zvakanga zvakakodzera kuita dzimwe bvunzo dzakatungamirira kumutongo. Ornella anotambura ne "chirwere chakawandisa", chirwere cheSanfilippo. Mushure mekutsanangura zvekutarisira, chiremba akataura nezvehupenyu hwake hwemakore gumi nemaviri kusvika gumi nematatu, uye kushaikwa kwese kwekurapa. Mushure mekuvhunduka kwakatiparadza chaiko, hatina kuzvibvunza kuti tinofanira kuva nemafungiro api, takadaro.
Nekuda kwese kuri munyika, takasarudza kutsvaga mushonga wekuponesa mwanasikana wedu. Zvemagariro, ndakasarudza. Hupenyu huri pedyo ne“iyo” hwakanga husisipo. Ndakaita hukama nevanhu chete vanogona kundibatsira kunzwisisa zvirwere zvisingawanzo. Ndakaswedera pedyo nechikwata chekutanga chekurapa, ndokuzoenda kuchikwata chesainzi cheAustralia… Takapeta maoko edu. Mwedzi nemwedzi, gore negore, taiwana vatambi vehurumende uye vakazvimirira vaigona kutibatsira. Vakanga vane mutsa zvokuti vakanditsanangurira nzira yekugadzira mushonga, asi hapana aida kupinda muchirongwa ichi cheSanfilippo chokurapa hosha. Zvinofanira kutaurwa kuti kazhinji kacho chirwere chisingazivikanwi, kuti kune 3 kune 000 zviitiko munyika dzekuMadokero. Muna 4, apo mwanasikana wangu aive negore rimwe chete, ndakagadzira sangano, Sanfilippo Alliance, kuunza izwi remhuri dzevana vakabatwa nechirwere ichi. Ndiyo nzira iyi, yakakomberedzwa uye yakakomberedzwa, kuti ndakakwanisa kushinga kumisa chirongwa changu, kutsvaga nzira yangu yakananga kukurapa. Ndakabva ndabata pamuviri paSalomé, mwanasikana wedu wechipiri wataida zvikuru. Ndinogona kutaura kuti kuzvarwa kwake yaive nguva huru yekufara kubva pakaziviswa chirwere cheOrnella. Ndichiri muwadhi yekuzvara, murume wangu akandiudza kuti € 000 yakanga yawira muhomwe yesangano. Nhamburiko dzedu dzokutsvaka mari dzakazobudirira! Asi patakanga tichidzingirira mhinduro, Ornella akanga achiderera.
Mukubatana nachiremba, ndakakwanisa, pakutanga kwa2007, kumisa chirongwa chekurapa majini, kugadzira chirongwa chedu, kuita zvidzidzo zvepreclinical zvinodiwa. Zvakatora makore maviri ebasa. Pachiyero chehupenyu hwaOrnella, zvinoita sekureba, asi isu taikurumidza zvakanyanya.
Sezvo isu takatamba-tamba nemashura emakiriniki ekutanga miedzo, Ornella akaramba zvakare. Izvi ndizvo zvakaipa mukurwa kwedu: mafungiro akanaka avanotipa anotsakatiswa nekurwadziwa, ichi chisingaperi chigadziko chekusuwa chatinonzwa muOrnella. Isu takaona mhedzisiro inovimbisa mumakonzo uye takafunga kugadzira SanfilippoTherapeutics yakazova Lysogene. Lysogene ndiro simba rangu, hondo yangu. Neraki, zvidzidzo zvangu uye ruzivo rwandakawana panguva yehupenyu hwangu hwekutanga hwehunyanzvi hwakandidzidzisa kuzvikanda mumhepo uye kushanda pazvidzidzo zvakaoma, nekuti iyi ndima yakanga isingazivikanwe kwandiri. Zvakadaro takaburusa makomo: simudza mari, hiya zvikwata, zvikomberedze nevanhu vakuru uye usangane nevagovani vekutanga. Nekuti hongu, Lysogene muunganidzwa wakasarudzika wematarenda akatanhamara avo, vese pamwe chete, vakawana hunyanzvi hwekugona kutanga miedzo yekiriniki yekutanga makore matanhatu mushure mekuziviswa kwechirwere chemwanasikana wangu. Munguva iyi, zvinhu zvose zvaifambawo zvakatipoteredza pamunhu oga: kazhinji taitama, tichichinja sangano repamba pese pazvaidiwa kuchinja zvinhu kuvandudza kugara zvakanaka kwaOrnella kana hanzvadzi yake duku. Salome. Ndinouya kuzorwisa kusaruramisira, uye Salomé anotevera. Salome anozvitora oshingirira. Ndinodada naye. Anonzwisisa, hongu, asi kusarongeka kwakadini kwaari kuti ave nekunzwa kwekutevera. Ndinoziva izvozvo uye ndinoedza kudzikamisa sezvinobvira, uye kutipa nguva yakawanda sezvinobvira nokuda kwedu tose, nguva apo munun’una wangu anogona kuona kuti ndinomuda sei tosewo. Boka rematambudziko raOrnella rinotitenderedza semhute, asi isu tinoziva kubata maoko pamwechete.
Muedzo wekutanga wekiriniki, muna 2011, wakabvumira kutungamirirwa kwechigadzirwa chakagadzirwa. Basa rakaitwa uye kubudirira kwaro kwakakosha nekuti vazhinji vakanzwisisa kuti vanogona kubatsira kune zvimwe zvirwere zvepakati tsinga system. Tsvagiridzo inotamiswa. Ichi chinhu chinofadza kune vanoisa mari… Chinangwa chedu ndechekugona kuderedza chirwere. Mabatirwo ekuyedza emuna 2011 akatoita kuti zvikwanise kunyaradza uye kudzivirira kusagadzikana uye kusagadzikana kwekurara izvo dzimwe nguva zvinotadzisa vana kurara kwemazuva akati wandei akatevedzana. Kurapwa kwedu kutsva, kwakasimba kunofanira kuita zvirinani. Ornella akawana mukana wake, uye ndinofanira kumuona achiparara. Asi kunyemwerera kwake, kutarisa kwake kwakanyanya kunonditsigira, apo tinoparura kuyedza kwedu kwechipiri kwekiriniki, muEurope neUSA; uye tienderere mberi nebasa redu netariro yekushandura zvakanaka hupenyu hwevamwe varwere vadiki, avo vakazvarwa saOrnella vane chirwere ichi.
Zvirokwazvo, dzimwe nguva handina kunzwisiswa, bhora dema, kubatwa zvisina kunaka kunyange, mumisangano yezvokurapa; kana kuti kufuratirwa nemakambani ekurojesa mafurati asingagamuchiri gadziriro dzinodiwa dzokugara zvakanaka kwemwanasikana wangu. Izvi ndozvazvinoita. Ndiri murwi. Chandinoziva, chokwadi, ndechekuti isu tese tine kugona, chero zviroto zvedu, zvekurwa kurwa chaiko.