{"id":3916,"date":"2026-01-29T00:03:06","date_gmt":"2026-01-29T00:03:06","guid":{"rendered":"https:\/\/bihavadis.com\/?p=3916"},"modified":"2026-01-29T00:03:06","modified_gmt":"2026-01-29T00:03:06","slug":"15-yasindaki-ulku-tedavisi-olmayan-krabbeyle-savasiyor","status":"publish","type":"post","link":"https:\/\/bihavadis.com\/index.php\/2026\/01\/29\/15-yasindaki-ulku-tedavisi-olmayan-krabbeyle-savasiyor\/","title":{"rendered":"1,5 ya\u015f\u0131ndaki \u00dclk\u00fc tedavisi olmayan krabbeyle sava\u015f\u0131yor"},"content":{"rendered":"

Minik \u00dclk\u00fc Nida hen\u00fcz 11 ayl\u0131kken, bir t\u00fcr sinir sistemi hastal\u0131\u011f\u0131 olan ve beyin h\u00fccrelerini g\u00fcnden g\u00fcne \u00f6ld\u00fcren \u201ckrabbe\u201d isimli nadir g\u00f6r\u00fclen bir hastal\u0131\u011fa yakaland\u0131.<\/p>\n

\u0130lk 6 ay\u0131nda normal ve sa\u011fl\u0131kl\u0131 bir bebek olan \u00dclk\u00fc Nida K\u00f6sece s\u00fcrekli a\u011fl\u0131yor, uyuyam\u0131yor, anne s\u00fct\u00fc emerken yutkunmakta zorluk \u00e7ekince ailesi, k\u0131zlar\u0131n\u0131 \u00f6nce Kadirli Devlet Hastanesi’ne ard\u0131ndan da Adana \u00c7ukurova \u00dcniversitesi T\u0131p Fakultesi Balcal\u0131 Hastanesi’ne g\u00f6t\u00fcrd\u00fc.<\/span><\/p>\n

Krabbe nedir<\/span><\/b><\/p>\n

<\/p>\n

Bir dizi testten ge\u00e7en \u00dclk\u00fc Nida\u2019ya, tam olarak te\u015fhis konulamad\u0131. G\u00fcnden g\u00fcne hareket kabiliyeti de zay\u0131flayan \u00dclk\u00fc Nida\u2019ya, Adana’daki Ba\u015fkent \u00dcniversitesi Hastanesi’nde 11 ayl\u0131kken krabbe hastal\u0131\u011f\u0131 te\u015fhisi konuldu. Zaman zaman hastal\u0131\u011f\u0131 ilerleyen ve krizler ge\u00e7iren minik \u00e7ocuk, g\u00fcnlerce yo\u011fun bak\u0131m \u00fcnitesinde tedavi g\u00f6rd\u00fc.<\/span><\/p>\n

\u015eu g\u00fcnlerde ailesinin evde kurdu\u011fu cihazlarla ya\u015fama tutunmaya \u00e7al\u0131\u015fan bir bu\u00e7uk ya\u015f\u0131ndaki \u00dclk\u00fc Nida\u2019n\u0131n, hastal\u0131\u011f\u0131n\u0131n bilinen bir tedavisi bulunmuyor. <\/span>
K\u0131z\u0131n\u0131n ya\u015famas\u0131 i\u00e7in var\u0131n\u0131 yo\u011funu satan, bor\u00e7lanarak adeta eve bir yo\u011fun bak\u0131m \u00fcnitesi kuran baba Emrah K\u00f6sece ise \u00dclk\u00fc Nida\u2019n\u0131n sa\u011fl\u0131\u011f\u0131na kavu\u015faca\u011f\u0131 g\u00fcn\u00fc bekliyor.<\/span><\/p>\n

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<\/div>\n<\/div>\n


<\/span><\/p>\n

“\u0130LK 6 AYINDA NORMAL B\u0130R BEBEKT\u0130”<\/span><\/b><\/p>\n

Minik \u00dclk\u00fc Nida\u2019n\u0131n ilk \u00f6nce g\u00fcl\u00fcmsemesini kaybetti\u011fini s\u00f6yleyen baba Emrah K\u00f6sece, \u201cKrabbe hastal\u0131\u011f\u0131 denilen bir hastal\u0131kla u\u011fra\u015f\u0131yoruz. Doktorlar\u0131n s\u00f6ylemesiyle milyonda bir g\u00f6r\u00fclen bir hastal\u0131k. K\u0131z\u0131m ilk 6 ay\u0131nda normal bir bebekti. 6 ay\u0131n sonunda hareketlerinde ve yemesinde bir gerileme ba\u015flad\u0131. G\u00fcl\u00fcmsemesini kaybetti. El kol hareketleri yava\u015flamaya ba\u015flad\u0131. Hastanelere g\u00f6t\u00fcrd\u00fck zor bir te\u015fhis oldu, uzun bir s\u00fcre\u00e7 ald\u0131. \u0130lk \u00f6nce beyin h\u00fccrelerinin \u00f6ld\u00fc\u011f\u00fc s\u00f6ylendi. Ard\u0131ndan da Krabbe hastal\u0131\u011f\u0131 te\u015fhisi konuldu. Bu hastal\u0131\u011f\u0131n do\u011fu\u015ftan geldi\u011fi ve genetik oldu\u011fu s\u00f6ylendi. Hastal\u0131\u011f\u0131n kendini saklad\u0131\u011f\u0131 ilk 6 ay\u0131ndan sonra ortaya \u00e7\u0131kt\u0131\u011f\u0131 ancak \u00f6zel testlerle te\u015fhis konulabildi\u011fi nadir bir hastal\u0131k oldu\u011fu doktorlarca s\u00f6ylendi. K\u0131z\u0131m\u0131n ya\u015fama tutunmas\u0131 i\u00e7in elimizden geleni yapaca\u011f\u0131z.\u201d<\/strong> dedi. <\/span><\/p>\n","protected":false},"excerpt":{"rendered":"

Osmaniye’de 1,5 ya\u015f\u0131ndaki \u00dclk\u00fc Nida, ender g\u00f6r\u00fclen kal\u0131tsal sinir sistemi rahats\u0131zl\u0131\u011f\u0131 olan krabbe isimli hastal\u0131kla m\u00fccadele ediyor.<\/p>\n","protected":false},"author":1,"featured_media":3917,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[670],"class_list":["post-3916","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-saglik","tag-teshis"],"_links":{"self":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/3916","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/comments?post=3916"}],"version-history":[{"count":1,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/3916\/revisions"}],"predecessor-version":[{"id":3920,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/posts\/3916\/revisions\/3920"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media\/3917"}],"wp:attachment":[{"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/media?parent=3916"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/categories?post=3916"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/bihavadis.com\/index.php\/wp-json\/wp\/v2\/tags?post=3916"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}