{"id":133943,"date":"2019-04-12T18:18:13","date_gmt":"2019-04-12T15:18:13","guid":{"rendered":"http:\/\/www.tvturk.com\/index.php\/ozel-kucuk-zeynep-eger-tedavi-edilmezse-3-yil-icinde-olecek\/"},"modified":"2019-04-12T18:18:16","modified_gmt":"2019-04-12T15:18:16","slug":"ozel-kucuk-zeynep-eger-tedavi-edilmezse-3-yil-icinde-olecek","status":"publish","type":"post","link":"http:\/\/www.tvturk.com\/index.php\/ozel-kucuk-zeynep-eger-tedavi-edilmezse-3-yil-icinde-olecek\/","title":{"rendered":"(\u00d6zel) K\u00fc\u00e7\u00fck Zeynep e\u011fer tedavi edilmezse 3 y\u0131l i\u00e7inde \u00f6lecek"},"content":{"rendered":"

Bursa\u2019da Sel\u00e7uk-\u00dcmran Sarg\u0131n \u00e7iftinin iki \u00e7ocu\u011fundan biri olan Zeynep Sarg\u0131n, aylard\u0131r \u00f6l\u00fcm kal\u0131m sava\u015f\u0131 veriyor. Hen\u00fcz 5 ya\u015f\u0131ndaki Zeynep, k\u00fc\u00e7\u00fcc\u00fck omuzlar\u0131n\u0131n ta\u015f\u0131yamayaca\u011f\u0131 kadar a\u011f\u0131r bir y\u00fck\u00fcn alt\u0131nda. Zeynep\u2019e, NCL T\u0130P2 ad\u0131 verilen ve T\u00fcrkiye\u2019de sadece 7 ki\u015fide g\u00f6r\u00fclen bir hastal\u0131k te\u015fhisi konuldu.<\/p>\n

Halk dilinde \u2019beyincik erimesi\u2019 ad\u0131 verilen hastal\u0131\u011f\u0131 durduracak ila\u00e7 temin edilmedi\u011fi takdirde Zeynep i\u00e7in \u00f6ng\u00f6r\u00fclen ya\u015fam s\u00fcresi sadece 3 y\u0131l. NCL hastal\u0131\u011f\u0131, T\u00fcrkiye\u2019de 70 ki\u015fide g\u00f6r\u00fcl\u00fcrken T\u0130P2 t\u00fcr\u00fc ise sadece 7 ki\u015fide bulunuyor. Bursa\u2019da ise ge\u00e7ti\u011fimiz aya kadar 3 ki\u015fide g\u00f6r\u00fclen T\u0130P2 hastas\u0131ndan biri hayat\u0131n\u0131 kaybedince say\u0131 2\u2019ye d\u00fc\u015ft\u00fc. Bu 2 ki\u015fiden biri olan k\u00fc\u00e7\u00fck Zeynep, hastal\u0131\u011f\u0131 ilerlemeden ayda 2 defa almas\u0131 gereken ve de\u011feri 150 bin TL olan ilac\u0131 bekliyor. Ailesi ise, Sa\u011fl\u0131k Bakanl\u0131\u011f\u0131 onay\u0131ndan ge\u00e7en ancak SGK \u00f6demesi kapsam\u0131na al\u0131nmayan \u2019Brineura Cerliponase Alfa\u2019 adl\u0131 ilac\u0131n maliyetini kendi imkanlar\u0131 ile kar\u015f\u0131layam\u0131yor.<\/p>\n

\u00c7\u00f6z\u00fcm SGK\u2019da<\/p>\n

T\u00fcrkiye\u2019de sadece Hacettepe \u00dcniversitesi Hastanesi\u2019nde uygulanabilen tedaviye g\u00f6re minik Zeynep\u2019in beynine tak\u0131lacak bir kaps\u00fcl ile 15 g\u00fcnde bir d\u0131\u015far\u0131dan ila\u00e7 enjekte edilerek eksik enzimler tamamlanacak. Zeynep i\u00e7in zaman daral\u0131rken, ila\u00e7 k\u0131sa s\u00fcrede temin edilemezse geri d\u00f6n\u00fc\u015f\u00fc olmayan bir yola girilecek.<\/p>\n

Kesin tedavisi olmayan ancak durdurulmas\u0131 m\u00fcmk\u00fcn olan bu hastal\u0131\u011fa kar\u015f\u0131 verilecek olan bu ila\u00e7 sayesinde Zeynep hayata tutunacak.<\/p>\n

\u0130la\u00e7, SGK geri \u00f6deme listesine al\u0131nd\u0131\u011f\u0131 takdirde Zeynep T\u00fcrkiye\u2019de devlet eliyle ilk kez tedavisi kar\u015f\u0131lanan \u00e7ocuk olacak. SMA hastalar\u0131ndan sonra kendi ila\u00e7lar\u0131n\u0131n da SGK listesine girmesini bekleyen onlarca ailenin g\u00f6z\u00fc \u015fimdilerde SGK\u2019da.<\/p>\n

\u201cHer ge\u00e7en g\u00fcn daha k\u00f6t\u00fcye gidiyor\u201d<\/p>\n

\u00c7aresiz aile yetkililerden yard\u0131m beklerken, evlad\u0131n\u0131n g\u00f6zlerinin \u00f6n\u00fcnde g\u00fcnden g\u00fcne eridi\u011fini ve \u00f6l\u00fcme yakla\u015ft\u0131\u011f\u0131n\u0131 vurgulayan baba Sel\u00e7uk Sarg\u0131n, \u201cK\u0131z\u0131ma daha \u00f6nceden epilepsi hastal\u0131\u011f\u0131 te\u015fhisi konulmu\u015ftu. Durumu k\u00f6t\u00fcye gidince doktorumuzu de\u011fi\u015ftirdik ve genetik testi yapt\u0131rd\u0131k. Hi\u00e7 tahmin etmedi\u011fimiz bir durumla kar\u015f\u0131la\u015ft\u0131k. \u00c7ok nadir g\u00f6r\u00fclen bu hastal\u0131\u011f\u0131n ilac\u0131 yurt d\u0131\u015f\u0131nda bulunmakta ve oradaki hastalar bu ilac\u0131 sa\u011fl\u0131k g\u00fcvencesi kapsam\u0131nda \u00fccretsiz temin edebiliyor. T\u00fcrkiye\u2019de SGK listesinde olmad\u0131\u011f\u0131 i\u00e7in geri \u00f6deme kapsam\u0131nda de\u011fil, ne yapaca\u011f\u0131m\u0131z\u0131 bilemiyoruz. Hacettepe Hastanesi\u2019nde yap\u0131lm\u0131\u015f tahliller sonucunda ald\u0131\u011f\u0131m\u0131z raporda e\u011fer k\u0131z\u0131m bu ilac\u0131 al\u0131rsa b\u00fcy\u00fck oranda faide sa\u011flayaca\u011f\u0131 yaz\u0131yor. Yetkililerden yard\u0131m bekliyoruz\u201d dedi.<\/p>\n

Anne \u00dcmran Sarg\u0131n ise \u2019aileler kendilerini bizim yerimize koyup d\u00fc\u015f\u00fcns\u00fcnler\u2019 diyerek, \u201cBa\u015fka aileler her sabah \u00e7ocuklar\u0131n yeni \u015feyler \u00f6\u011frendi\u011fini fark ediyor. Benim k\u0131z\u0131m her ge\u00e7en g\u00fcn daha k\u00f6t\u00fcye gidiyor\u201d ifadelerini kulland\u0131.

\"(\u00d6zel) <\/a> <\/div> <\/div>
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BURSA\u2019DA SEL\u00c7UK-\u00dcMRAN SARGIN \u00c7\u0130FT\u0130N\u0130N \u0130K\u0130 \u00c7OCU\u011eUNDAN B\u0130R\u0130 OLAN ZEYNEP SARGIN, AYLARDIR \u00d6L\u00dcM KALIM SAVA\u015eI VER\u0130YOR. HEN\u00dcZ 5 YA\u015eINDAK\u0130 ZEYNEP, K\u00dc\u00c7\u00dcC\u00dcK OMUZLARININ TA\u015eIYAMAYACA\u011eI KADAR A\u011eIR B\u0130R Y\u00dcK\u00dcN ALTINDA. ZEYNEP\u2019E, NCL T\u0130P2 ADI VER\u0130LEN VE \u00c7OK NAD\u0130R G\u00d6R\u00dcLEN B\u0130R HASTALIK TE\u015eH\u0130S\u0130 KONULDU.<\/p>\n","protected":false},"author":1,"featured_media":133944,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[1],"tags":[1073,28107,12985,4601,1166,30887,144,231,11857],"class_list":["post-133943","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-genel","tag-ozel","tag-edilmezse","tag-eger","tag-icinde","tag-kucuk","tag-olecek","tag-tedavi","tag-yil","tag-zeynep"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/www.tvturk.com\/wp-content\/uploads\/2019\/04\/ozel-kucuk-zeynep-eger-tedavi-edilmezse-3-yil-icinde-olecek_e3a5f46.jpg?fit=1000%2C562","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/paKIfm-yQn","_links":{"self":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/133943","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/comments?post=133943"}],"version-history":[{"count":1,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/133943\/revisions"}],"predecessor-version":[{"id":133949,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/posts\/133943\/revisions\/133949"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media\/133944"}],"wp:attachment":[{"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/media?parent=133943"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/categories?post=133943"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.tvturk.com\/index.php\/wp-json\/wp\/v2\/tags?post=133943"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}