{"id":305,"date":"2020-01-18T22:06:24","date_gmt":"2020-01-18T19:06:24","guid":{"rendered":"http:\/\/hifoder.org\/?p=225"},"modified":"2020-01-18T22:06:24","modified_gmt":"2020-01-18T19:06:24","slug":"halil-emrenin-yardim-cigligi","status":"publish","type":"post","link":"http:\/\/hifoder.org\/en\/halil-emrenin-yardim-cigligi\/","title":{"rendered":"Halil Emre&#8217;nin Yard\u0131m \u00c7\u0131\u011fl\u0131\u011f\u0131"},"content":{"rendered":"<p class=\"wp-block-paragraph\"><strong><em>D\u00fcnyada enden g\u00f6r\u00fclen hipofosfatazya hastas\u0131 12 ya\u015f\u0131ndaki Halil Emre Acar, yetkililerden yard\u0131m bekliyor.<\/em><\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> \u0130stanbul Cevizliba\u011f&#8217;da ya\u015fayan Acar ailesinin 3&#8217;nc\u00fc \u00e7ocu\u011fu 12 ya\u015f\u0131ndaki Halil Emre, do\u011fduktan 1 y\u0131l sonra y\u00fcr\u00fcmeye ba\u015flad\u0131. Ancak anne Selma Acar, minik \u00e7ocu\u011fun ya\u015f\u0131tlar\u0131na g\u00f6re y\u00fcr\u00fcmekte zorland\u0131\u011f\u0131n\u0131 g\u00f6r\u00fcnce doktora ba\u015fvurdu. Doktordan \u00e7ocu\u011funun kas hastas\u0131 oldu\u011funu \u00f6\u011frenen ailenin hayat\u0131 karard\u0131. O\u011flunun iyile\u015fmesi i\u00e7in tedavi yollar\u0131 arayan anne Acar 10 y\u0131l boyunca kas hastal\u0131\u011f\u0131 tedavisi i\u00e7in u\u011fra\u015ft\u0131. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>D\u00f6n\u00fc\u015f i\u00e7in ald\u0131\u011f\u0131 u\u00e7ak bileti ile cenazesi geldi<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> Tedavi s\u00fcrecinde maddi olarak zorlanmamak i\u00e7in baba Tar\u0131k Acar Afrika&#8217;ya \u00e7al\u0131\u015fmaya gitti. Baba Acar, bir s\u00fcre \u00e7al\u0131\u015ft\u0131ktan sonra ailesine s\u00fcrpriz yapmak i\u00e7in \u00fclkeye d\u00f6n\u00fc\u015f bileti ald\u0131. Acar \u00fclkeye d\u00f6nmesine birka\u00e7 g\u00fcn kala in\u015faatta \u00e7al\u0131\u015f\u0131rken kalp krizi ge\u00e7irerek hayat\u0131n\u0131 kaybetti. Acar&#8217;\u0131n cenazesi d\u00f6n\u00fc\u015f i\u00e7in ald\u0131\u011f\u0131 u\u00e7ak bileti ile \u00fclkeye getirtildi. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>10 y\u0131l sonra kas hastas\u0131 de\u011fil Hipofosfatazya oldu\u011fu ortaya \u00e7\u0131kt\u0131<\/strong> <\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"alignleft size-large is-resized\"><img fetchpriority=\"high\" decoding=\"async\" src=\"https:\/\/hifoder.org\/wp-content\/uploads\/2020\/01\/dunyada-enden-gorulen-hipofosfatazya-hastasi-12-yasindaki-halil-emre-acar-yetkililerden-yardim-bekliyor-IHA-20190914AW801957-3-t.jpg\" alt=\"\" class=\"wp-image-228\" width=\"404\" height=\"269\"\/><\/figure><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"> Halil Emre 12 ya\u015f\u0131na geldi\u011finde yap\u0131lan tetkiklerde ilgin\u00e7 bir durum ortaya \u00e7\u0131kt\u0131. Doktorlar Halil Emre&#8217;nin kas hastas\u0131 olmad\u0131\u011f\u0131n\u0131, &#8220;Hipofosfatazya&#8221; ad\u0131 verilen d\u00fcnyada nadir g\u00f6r\u00fclen enzim aktivitesinin eksikli\u011fine ba\u011fl\u0131 olarak geli\u015fen kemik bozuklu\u011fu oldu\u011funu tespit etti. \u0130la\u00e7 tedavisi ile iyile\u015fmesinin m\u00fcmk\u00fcn oldu\u011funu \u00f6\u011frenen aile i\u00e7in bir umut kap\u0131s\u0131 a\u00e7\u0131ld\u0131. Halil Emre, ihtiyac\u0131 olan ilac\u0131n kar\u015f\u0131lamas\u0131 i\u00e7in yetkilerden yard\u0131m bekliyor. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>\u201cO g\u00fcn benim hayat\u0131m\u0131n karard\u0131\u011f\u0131 g\u00fcnd\u00fc\u201d<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> O\u011flu Halil Emre&#8217;nin 2 y\u0131l s\u00fcren tedavi s\u00fcreci sonras\u0131 kas hastas\u0131 te\u015fhisi konuldu\u011funda hissettiklerini aktaran Anne Selma Acar, \u201cHalil Emre 2007 do\u011fumlu, do\u011fumundan 1 sene sonra y\u00fcr\u00fcmeye ba\u015flay\u0131nca bir tak\u0131m s\u0131k\u0131nt\u0131lar\u0131 olmaya ba\u015flad\u0131 d\u00fc\u015f\u00fcyordu. Doktora gitmeye karar verdim. Doktor &#8216;evet bir sorun var ama nedir sorun bunu ara\u015ft\u0131raca\u011f\u0131z, bakaca\u011f\u0131z&#8217; dedi ve ara\u015ft\u0131rmalara ba\u015flad\u0131k. 2 sene kadar Cerrahpa\u015fa&#8217;da takibi oldu. Bu arada yap\u0131lan tahliller \u00e7ocu\u011fun kas hastas\u0131 oldu\u011funa dair bize bilgi verildi. Doktor &#8216;sen bu \u00e7ocu\u011fu hi\u00e7bir yere g\u00f6t\u00fcrme kas hastas\u0131 kaderine raz\u0131 ol&#8217; dedi. O g\u00fcn benim hayat\u0131m\u0131n karard\u0131\u011f\u0131 g\u00fcnd\u00fc. Bu hastal\u0131\u011f\u0131n bir \u00e7o\u011fu \u00f6l\u00fcmc\u00fcl sonu\u00e7larla sonu\u00e7lanan bir hastal\u0131k. 2 ya\u015f\u0131ndaki \u00e7ocu\u011fa bir s\u00fcr\u00fc ila\u00e7 y\u00fcklerseniz daha sonra b\u00f6breklerinde ta\u015f olu\u015ftu. 2 sene sonra olu\u015fan ta\u015flar\u0131 Mecidiyek\u00f6y&#8217;de \u00f6zel bir merkezde b\u00f6brek ta\u015flar\u0131n\u0131 k\u0131rd\u0131rd\u0131k ka\u00e7 kere anestezi verildi\u201d diye konu\u015ftu. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>Anne Acar ya\u015fad\u0131klar\u0131n\u0131 anlat\u0131rken g\u00f6zya\u015flar\u0131na bo\u011fuldu<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> E\u015finin tedavi masraflar\u0131n\u0131 kar\u015f\u0131lamak i\u00e7in Afrika&#8217;ya \u00e7al\u0131\u015fmaya gitti\u011fi s\u0131rada hayat\u0131n\u0131 kaybetti\u011fini anlat\u0131rken g\u00f6zya\u015flar\u0131n\u0131 tutamayan Anne Acar, \u201cE\u015fimle bir g\u00fcn oturduk konu\u015ftuk e\u011fer bir g\u00fcn bu hastal\u0131\u011f\u0131n tedavisi olursa maddi a\u00e7\u0131dan ma\u011fdur olmayal\u0131m dedik. Bir g\u00fcn ben inan\u0131yorum bunun da tedavisi \u00e7\u0131kacak ve benim \u00e7ocu\u011fum iyile\u015fecek dedim. Onun i\u00e7in g\u00fc\u00e7l\u00fc olal\u0131m dedik ve bunu \u00fczerine e\u015fim Afrika&#8217;ya kadar gitti. \u0130\u015f i\u00e7in gitti hayat\u0131nda al\u00e7\u0131c\u0131l\u0131ktan ve in\u015faat i\u015finden ba\u015fka hi\u00e7bir \u015fey yapmam\u0131\u015f insan dedi ki &#8216;oraya giderim al\u00e7\u0131 i\u015fi yapar\u0131m belki orada biraz daha fazla para kazan\u0131r\u0131m&#8217;. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> Tam b\u00f6yle art\u0131k i\u015fler d\u00fczeldi her \u015feyi yoluna koyaca\u011f\u0131z biraz da param\u0131z olacak \u00e7ocu\u011fun durumu i\u00e7in art\u0131k t\u0131p ilerliyor her g\u00fcn yeni bir \u015fey \u00e7\u0131k\u0131yor dedik. Derken 2015 senesinde 9 Haziran&#8217;da cenaze haberi i\u015f yerime geldi. Ben ona bir ak\u015fam sitemle &#8216;ben \u00e7ok yoruluyorum sen kalk\u0131p gittin oraya ama \u00e7ocuklar i\u015f g\u00fc\u00e7 yapam\u0131yorum yaln\u0131z. D\u00f6n gel&#8217; demi\u015ftim. &#8216;Gerekirse burada ba\u015fka \u015feyler yapar\u0131z&#8217; dedim o da bana s\u00fcrpriz yapmak i\u00e7in tam Ramazan&#8217;da 2 g\u00fcn \u00f6ncesine bilet alm\u0131\u015f. Ertesi g\u00fcn sal\u0131yd\u0131 \u00e7ok iyi hat\u0131rl\u0131yorum. 9 Haziran Sal\u0131 cenaze haberi geldi. T\u00fcrkiye&#8217;ye d\u00f6n\u00fc\u015f i\u00e7in bilet alm\u0131\u015ft\u0131 dedim ya o biletle cenazesi geldi. B\u00f6ylece bizim para kazanma \u00fcmitlerimiz bir yerde sona ermi\u015f oldu. Benim tek umudum e\u015fimdi. O gittikten sonra s\u0131\u011f\u0131nacak hi\u00e7bir kap\u0131m kalmam\u0131\u015ft\u0131 yaln\u0131zd\u0131m\u201d dedi. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>\u201cHipofosfatazya d\u00fcnyada \u00e7ok nadir g\u00f6r\u00fclen bir hastal\u0131k\u201d<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> 10 y\u0131l kas hastas\u0131 tan\u0131s\u0131n\u0131n ard\u0131ndan 2017 y\u0131l\u0131nda yap\u0131lan tetkiklerle Halil Emre&#8217;nin hipofosfatazya hastas\u0131 oldu\u011funun ortaya \u00e7\u0131kt\u0131\u011f\u0131n\u0131 anlatan anne Acar, \u201c2017 y\u0131l\u0131nda te\u015fhisimiz de\u011fi\u015fti hipofosfatazya denilen bir hastal\u0131k oldu\u011fu s\u00f6ylendi. Ve bu d\u00fcnyada \u00e7ok nadir g\u00f6r\u00fclen bir hastal\u0131k \u00e7e\u015fidiymi\u015f. Anne karn\u0131ndan do\u011fumundan itibaren 3 ile 6 seneye kadar mutlaka \u00f6l\u00fcmle sonu\u00e7lanan bir hastal\u0131k. 6-18 ya\u015f aras\u0131 ilerleyenler var. 18 ya\u015f\u0131na kadar gelebilen \u00e7ocuk say\u0131s\u0131 \u00e7ok azm\u0131\u015f\u201d \u015feklinde konu\u015ftu. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>\u201cSiz \u00e7ocu\u011funuzu deney olarak m\u0131 kullanmak istiyorsunuz ?\u201d<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> Hipofosfatazya te\u015fhisi konulduktan sonra yeniden doktorlar\u0131n kap\u0131s\u0131n\u0131 \u00e7ald\u0131klar\u0131n\u0131 belirten Acar, \u201cHekimlerimizle g\u00f6r\u00fc\u015ft\u00fck te\u015fhis kondu. Daha sonra doktorlar &#8216;o\u011flunuzla gelin sizinle bir \u015fey konu\u015faca\u011f\u0131z&#8217; dediler gittik. &#8216;G\u00f6z\u00fcn\u00fcz ayd\u0131n \u00e7ocu\u011funuz kas hastas\u0131 de\u011fil hipofosfatazya denilen bir kemik hastal\u0131\u011f\u0131 bu hastal\u0131\u011f\u0131n tedavisi \u00e7ok basit bundan sonra b\u00f6yle devam edece\u011fiz&#8217; dediler. Sonra aradan 1 ay ge\u00e7ti arayan yok 6 ay kadar aranmad\u0131m. Bu arada telefon a\u00e7\u0131yorum telefonlar\u0131ma d\u00f6n\u00fclm\u00fcyor. Bir doktor bey ile g\u00f6r\u00fc\u015ft\u00fcm tedaviye bir an \u00f6nce ba\u015flamak istedi\u011fimizi s\u00f6yledim. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> O da bize &#8216;siz \u00e7ocu\u011funuzu deney olarak m\u0131 kullanmak istiyorsunuz sizin amac\u0131n\u0131z ne biz size tedavisi var m\u0131 dedik&#8217; diye tersledi\u201d ifadelerini kulland\u0131. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> O\u011flu Halil Emre&#8217;nin v\u00fccudunun ya\u015fl\u0131l\u0131k boyutunda oldu\u011funu ifade eden Acar, &#8220;Benim \u00e7ocu\u011fum 12 ya\u015f\u0131nda DEXA (kemik \u00f6l\u00e7\u00fcm\u00fc) \u00f6l\u00e7\u00fcm\u00fc ya\u015fl\u0131l\u0131k boyutunda ama bu ilac\u0131 kulland\u0131\u011f\u0131 takdirde tedavisi olaca\u011f\u0131 umudunu verdiler. Nas\u0131l kas hastal\u0131\u011f\u0131n\u0131n tedavisine ula\u015f\u0131ld\u0131 ve \u015fuan hastalar tedavi olup iyile\u015fiyorlarsa l\u00fctfen bizim hastal\u0131\u011f\u0131m\u0131za da bir el at\u0131ls\u0131n\u201d dedi. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>\u201cOkulda bana kaplumba\u011fa dediler dalga ge\u00e7tiler\u201d<\/strong> <\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"alignleft size-large is-resized\"><img decoding=\"async\" src=\"http:\/\/hifoder.org\/wp-content\/uploads\/2020\/01\/ozel-dunyada-nadir-gorulen-hipofosfatazya-has-12424545_amp-1024x682.jpg\" alt=\"\" class=\"wp-image-227\" width=\"394\" height=\"262\"\/><\/figure><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"> D\u00fcnyada nadir g\u00f6r\u00fclen Hipofosfatazya hastas\u0131 Halil Emre Acar&#8217;\u0131n tek iste\u011fi ise ya\u015f\u0131tlar\u0131 gibi ko\u015fup oynamak. Okulda ya\u015fad\u0131\u011f\u0131 s\u0131k\u0131nt\u0131lar\u0131 anlatan Halil Emre, &#8220;Okula ba\u015flad\u0131\u011f\u0131m zaman arkada\u015flar\u0131m taraf\u0131ndan s\u0131k\u0131nt\u0131lar ba\u015flad\u0131. Hocalar\u0131m\u0131z pek ilgilenmiyordu. Okulda bana lakap takt\u0131lar kaplumba\u011fa dendi. \u0130lkokulda s\u0131k\u0131nt\u0131lar \u00e7ektim hatta psikolo\u011fa gitmek zorunda kald\u0131m. \u015euan okulumda hi\u00e7bir s\u0131k\u0131nt\u0131 olmuyor. Okulum iyi devam ediyorum. Basketbol ve futbol oynarken ko\u015farken hala zorlan\u0131yorum\u201d diye konu\u015ftu. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"> <strong>\u0130HA &#8211;<\/strong> <strong>Tunacan Atalay<\/strong> <\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>","protected":false},"excerpt":{"rendered":"<p>D\u00fcnyada enden g\u00f6r\u00fclen hipofosfatazya hastas\u0131 12 ya\u015f\u0131ndaki Halil Emre Acar, yetkililerden yard\u0131m bekliyor. \u0130stanbul Cevizliba\u011f&#8217;da ya\u015fayan Acar ailesinin 3&#8217;nc\u00fc \u00e7ocu\u011fu 12 ya\u015f\u0131ndaki Halil Emre, do\u011fduktan 1 y\u0131l sonra y\u00fcr\u00fcmeye ba\u015flad\u0131. Ancak anne Selma Acar, minik \u00e7ocu\u011fun ya\u015f\u0131tlar\u0131na g\u00f6re y\u00fcr\u00fcmekte zorland\u0131\u011f\u0131n\u0131 g\u00f6r\u00fcnce doktora ba\u015fvurdu. Doktordan \u00e7ocu\u011funun kas hastas\u0131 oldu\u011funu \u00f6\u011frenen ailenin hayat\u0131 karard\u0131. O\u011flunun iyile\u015fmesi i\u00e7in [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":957,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[7,5],"tags":[],"class_list":["post-305","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-duyurular","category-haberler"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Halil Emre&#039;nin Yard\u0131m \u00c7\u0131\u011fl\u0131\u011f\u0131 - Hifo-DER<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hifoder.org\/en\/halil-emrenin-yardim-cigligi\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Halil Emre&#039;nin Yard\u0131m \u00c7\u0131\u011fl\u0131\u011f\u0131 - Hifo-DER\" \/>\n<meta property=\"og:description\" content=\"D\u00fcnyada enden g\u00f6r\u00fclen hipofosfatazya hastas\u0131 12 ya\u015f\u0131ndaki Halil Emre Acar, yetkililerden yard\u0131m bekliyor. \u0130stanbul Cevizliba\u011f&#8217;da ya\u015fayan Acar ailesinin 3&#8217;nc\u00fc \u00e7ocu\u011fu 12 ya\u015f\u0131ndaki Halil Emre, do\u011fduktan 1 y\u0131l sonra y\u00fcr\u00fcmeye ba\u015flad\u0131. Ancak anne Selma Acar, minik \u00e7ocu\u011fun ya\u015f\u0131tlar\u0131na g\u00f6re y\u00fcr\u00fcmekte zorland\u0131\u011f\u0131n\u0131 g\u00f6r\u00fcnce doktora ba\u015fvurdu. Doktordan \u00e7ocu\u011funun kas hastas\u0131 oldu\u011funu \u00f6\u011frenen ailenin hayat\u0131 karard\u0131. 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