Ganawa: Valeria na da Down Syndrome kuma mahaifiyarsa na ƙaunarta ta wannan hanyar

matsakaita matsakaita

A yau muna magana da Blanca Antón Infantes, mahaifiyar Valeria, yarinyar da ba ta haihu ba tare da Down syndrome wanda aka yi mata aiki a Kirsimeti na ƙarshe don cututtukan zuciya lokacin da take kimanin watanni 6.

MH: Sannu Blanca, Na yi farin ciki da kuka yarda kuka ba mu wannan hira, labarinku ya taɓa ni sosai kuma ina so in raba shi ga wasu.

Farin AI: Na gode, gaskiya ni ban taba yin haka ba, don haka za ku fada min abin da kuke so in bayyana shi.

MH: Da kyau, abin da muke so mu sani shine labarin Valeria, tun daga farko, yaya ciki, yaya kuka san shi, yadda iyalin suka ɗauki, da dai sauransu.

Farin AI: Na gano cewa ina da cutar rashin lafiya a cikin awanni 2 da yin aikin tiyatar.

Na gano game da ciki lokacin da na kusan kamar makonni 6 kuma, da kyau, komai yana tafiya daidai, sai dai ban lura da shahararrun shuɗaɗɗun shuɗa ba. Amma kasancewar ni sabon shiga, banyi tsammanin hakan al'ada bane, nayi tsammanin zan lura dasu daga baya.

Echoes 4D ya gan ta, duk da kyau, cikin nutsuwa mai ciki. Amma lokacin da sati na 33 ya iso, sun ga Valeria ba ta da nauyi sosai kuma sun maimaita duban duban ta a mako mai zuwa. A cikin mako guda babu abin da ya ƙaru, kuma sun damu.

Makon 34 da abubuwa sun kasance iri ɗaya ... kilogram 1,500 da ɗan motsin tayi, na fara lura da shi kaɗan, don haka aka shigar da ni 34 + 5 don CIR, (Ci gaban ɓoyayyen cikin da ya ɓata lokaci) don kiyaye ni, kuma ga " abin da suke yi. " A wannan daren sun sanya ni masu kulawa kuma sun bar ni a kan komai na abin da zai iya faruwa gobe ...

duban dan tayi

Wannan a ranar Juma'a, 19 ga Mayu, Asabar, 20 ga Mayu da ƙarfe 9 na safe suka sake sa ni a kan masu sa ido kuma kafin su gama, wani yaro da ya yi ado don dakin tiyata ya shiga ya ce da ni: Zo, kyakkyawa, za mu je bangaren tiyatar haihuwa, ee ba ya girma a ciki zai yi girma a waje.

Ina tsammanin na tsorata da mutuwa, sai na kira mijina na ce kawai: "Zo ka bude ni, gudu ka zo in bude." Na shiga dakin tiyata ina kuka ina rawar jiki da tsoro (ina tsammanin ban taba rawar jiki da tsoro kamar wannan ranar ba)


Karfe 10:40 Naji tana kuka a hanyar fita, sun ba ni na sumbace ta sannan suka tafi da ita zuwa incubators.

Duk da yake a cikin farfadowa sun bar miji na kuma na gan shi fari kamar lemun tsami, wani abu ba daidai ba. Yana tambayata yaya nake kuma nace masa lafiya lau, amma yaya yarinyar? Ya gaya mani lafiya, amma suna tsammanin yana da Down Syndrome, za su yi wasu gwaje-gwaje.

A wannan lokacin amsata ita ce: To. Kuma kamar babu komai, ban san abin da ya faru da ni da ban amsa ba.

Da kyau, gobe za mu koma sama don ganinta, kuma sun bar ni in riƙe ta a hannuna cikin fata zuwa fata, kasancewarta tare da ita a cikin kangaroo, ina hawaye a idanuna ina tunanin cewa kuskure ne, yaya yarinyata ba za su sami komai ba idan duk gwaje-gwaje sun yi kyau. Wata nas ta zo ta fada mani:

  • Kai maman Valeria ne, ko?
  • Ee.
  • Ni ne wanda na ga cewa yarinyarku tana da DS.
  • Da kyau, sun gaya mani cewa zai iya zama kuskure, cewa yana da kaɗan sosai kuma ya yi wuri a tabbatar da shi ba tare da hujja ba.
  • (tare da murmushi a fuskarsa wanda ya cutar da ni na firgita, ya amsa) Ha, zai zama karo na farko cikin shekaru 20 da na yi kuskure.

Na fashe da kuka, na rungume ta na fashe da kuka. Bayan kwana 2, sabon busa. Sun gaya mana cewa yana da ciwon zuciya kuma dole ne ayi masa aiki idan ya kai shekaru kuma ya kai nauyi. Ba zan iya yin imani ba, awanni 48 na haihuwa kuma na ɗauki sanduna kawai.

Kwanaki 45 ne a cikin jarirai, a wannan lokacin, makonni 3 da shiga, sakamakon karyotype ya iso. Tabbatar da tabbaci ga trisomy 21. Yata na da Down Syndrome. Bayan yawan tashin hankali, da kwanaki suna kuka suna neman "mai laifi", suna cewa me yasa mata, me yasa ni, me yasa gare mu, miji, mahaifinta, ta buɗe idanuna. Shin yana da SD, DON HAKA? Babu wani abu da aka gyara ta hanyar kuka kuma abin da za ku yi shine ku ga abin da yarinyar take buƙata. Bayan wata daya na fara ganin rayuwa daban, in dauke ta daban.

MH: Gwargwadon yadda ka san ka, a bayyane yake cewa kai mace ce mai faɗa sosai.

Farin AI:  A gaskiya na yi tsammanin zan mutu a ranar da aka tabbatar da cutar, na rantse, na zaci zan mutu a wurin. Ban taɓa jin tsoro sosai ba, ban san dalilin ba, amma na girgiza kamar ganye kuma kawai na san yadda zan ce: "Ina jin tsoron mutuwa, ina jin tsoro." Amma hey, yanzu ya sake faruwa sau 100. Ina gaya muku wannan kuma ina kuka a lokaci guda ...

MH: Ka yi tunanin cewa muna yin hakan ne don mutane su fahimci cewa babu wani abu da ya dace da ƙarin chromosome. Cewa babu buƙatar tsoro. Kuma muddin kukan na farin ciki ne, ko kuma aƙalla ka sauke dukkan damuwar, maraba.

Farin AI: Saboda na tuna duk wannan, yana da matukar wahala, ba zaku taɓa tunanin zai iya faruwa da ku ba.

MH: Manufarmu ita ce mutane su san wannan, cewa da gaske babu yadda za a guje shi kuma ba hukunci ba ne.

Farin AI: Ba ni da masaniya game da samun 'ya mace ba tare da DS ba, saboda kafin in gan ta, sun riga sun gaya mani cewa ina da ita.

zamantakewar zamantakewar al'umma

MH: Don haka, gaya mana yadda ake son diya mace tare da DS.

Farin AI: Da kyau, a wurina ita ce ta musamman saboda ɗiyata ce, ban ga yarinya mai DS ba, kawai ina ganin Valeria ne.

Mun shiga wani mawuyacin lokaci, mai matukar wahala, wanda shine aikin zuciyarta, saboda Down din yana da babban kaso mai yawa na ciwon zuciya kuma tana dashi. An riga an sarrafa shi kuma yana da kyau sosai, amma ya zama dole a wuce shi.

Tana zuwa Kulawa da Kula da Yara, kulawar jiki da kuma azuzuwan motsa jiki, saboda suna da ciwon hypotonia na muscular kuma dole ne ka "taimaka musu" kaɗan. Saboda nauyin nauyin haihuwar ta, tana bayan sauran yara ta fuskar girma, ci gaba, da sauransu. Amma a cikin rashin lokacin haihuwa da Down Syndrome yana aiki sosai.

Dole ne mu fahimci cewa suna buƙatar tallafi da ƙarfafawa, kuma kada su ɗauka a matsayin wani abu "mara kyau", idan ba haka ba akasin haka, to a gare su ne, don haka gobe suna da rayuwa iri ɗaya da 'yancin kai kamar mutum ba tare da DS ba. Yana da abubuwan karfafawa yayin da yaro zai iya samun aji mai zaman kansa kuma hakane. Abin da kawai nake so shi ne Valeria ta wadatu da kanta.

Mutane da yawa suna tunanin cewa daban ne amma duk da cewa ni sabon shiga ne, ban ga yarinyata tana yin wani abu daban da na sauran jarirai ba, tana dariya, kuka, wasa da kuma sanya mu farin ciki a kowace rana kamar kowane yaro yana yiwa iyayensa, kowane ci gaba ƙungiya ce.

Kafin nayi ciki koyaushe ina tunanin cewa idan nazo da matsala zan zubar da ciki, yanzu, duk lokacin da na kalle ta ina tunanin zanyi kewar samunta kuma ba zan iya gafartawa kaina ba.

Paul Pineda

Pablo Pineda, SD na Sifen ta farko da ta gama digiri na jami'a. Misalin wadatar kai.

MH: A wannan rayuwar, komai yana faruwa ne saboda dalili, wataƙila dole ne a haife Valeria don koya muku wani abu.

Farin AI: Gaskiyar ita ce, a, ka fara kimanta wasu abubuwa, ka ga muhimman abubuwan da ba ka yi a da ba kuma akasin haka.

MH: Da kyau, a zahiri, Ina tsammanin cewa tare da duk wannan shaidar kun amsa duk tambayoyin da muke son yi muku, ba tare da kun taɓa tambayarsu ba. Shin kana son yin ambato na musamman ko kuwa kana da wani abin godiya?

Farin AI: Da kyau, gaskiyar ita ce eh, Ina so in iya gode wa ɗaukacin ƙungiyar tiyatar cututtukan yara a Asibitin Universitario de La Paz. Musamman Raúl Sánchez, Juvenal Rey da Luz Polo. Su da kanmu waɗanda muke ma'amala dasu kuma duk wata kalma ta godiya ta gaza. Na gode da miliyan daya saboda abin da kuka yi wa yarinyarmu.

Godiya ga ƙungiyar REA / UCI don kula da yara da iyaye sosai, kun sa zamanmu a can ya kasance mai daɗi kamar yadda ya yiwu cikin abin da yake, kuna da ban mamaki.

Down ciwo yara hadewa

Ga uwayen Down Asturias, saboda wannan babban tallafi da muke samu a cikinsu.

Kuma Cesar Daniel Cuervo García, mahaifin Valeria, abokin gwagwarmaya na a cikin wannan kasada. Domin ba tare da ku ba da na nitse, kun taimake ni kada na faɗi kuma in ga tsabta inda da farko na ga duhu kawai. Kun kasance, kun kasance kuma za ku kasance ginshiƙi a rayuwarmu.

Zuwa ga Alberto da Sonia, baffan 'yaruwa na' 'karya' ', wadanda suka kasance a gindin canyon tun lokacin da ta zo duniya kuma ta ci gaba da zama.

Zuwa gare ku don wannan hira.

Kuma ƙarshe amma ba mafi ƙaranci ba, ga ɗaukacin rukunin facebook MALASMADRES, ba tare da wata shakka ba sun kasance mafi girman goyon baya da zan iya samu, ban mamaki.

MH: Godiya a gare ku Blanca, saboda kasancewar ku wanene, don kawo ɗiyanku gaba, wannan abin mamaki, cewa kamar yadda ku da abokinku Susana Pardillos ke faɗi "kun yi da kwazo sosai har kuka ɗora ma wani chromosome a kanta." Valeria ta yi matukar sa'ar samun ki a matsayin uwa, ina fatan kowa ya cire makafin kuma ya ga cewa zama daban ba zai sa ka zama kasa da wani ba, sai dai kawai ya zama daban.


Kasance na farko don yin sharhi

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