{"id":26005,"date":"2026-01-07T13:10:09","date_gmt":"2026-01-07T17:10:09","guid":{"rendered":"https:\/\/www.emilysentourage.org\/?p=26005"},"modified":"2026-01-07T13:49:59","modified_gmt":"2026-01-07T17:49:59","slug":"seeing-forward-imagining-a-future-without-limits-for-emily-and-the-final-10","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/seeing-forward-imagining-a-future-without-limits-for-emily-and-the-final-10\/","title":{"rendered":"\u0130leriyi G\u00f6rmek: Emily ve Final 10% i\u00e7in S\u0131n\u0131rlar\u0131n Olmad\u0131\u011f\u0131 Bir Gelecek Hayal Etmek"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">Emily'nin yakt\u0131\u011f\u0131 her do\u011fum g\u00fcn\u00fc mumu, her zaman bir ya\u015f daha ya\u015flanmaktan daha fazlas\u0131n\u0131 ifade etmi\u015ftir.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Bu \u015fu anlama geliyor <\/span><b><i>burada bir y\u0131l daha<\/i><\/b><b>.<\/b><span style=\"font-weight: 400;\"> Asla dinlenmeyen bir hastal\u0131kla m\u00fccadele etmenin bir y\u0131l\u0131 daha. Umudu, disiplini ve cesareti -bazen sessizce, bazen meydan okurcas\u0131na- se\u00e7erek yola devam etti\u011fimiz bir y\u0131l daha.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Mutasyon hedefli tedavilerden yararlanan kistik fibrozisli (KF) ki\u015filerin yakla\u015f\u0131k 90%'si i\u00e7in gelecek a\u00e7\u0131ld\u0131. Y\u00fcksek lisansa geri d\u00f6n\u00fcyorlar, kariyer yap\u0131yorlar, aile kuruyorlar, hobilere dal\u0131yorlar ve d\u00fcnyay\u0131 geziyorlar.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Ancak Emily -ve son 10%'deki di\u011fer herkes- bu at\u0131l\u0131mlardan yararlanam\u0131yor.<\/span><b>zaman hala daral\u0131yor.&nbsp;<\/b><\/p>\n<p><span style=\"font-weight: 400;\">Emily's Entourage (EE) i\u015fte bunu de\u011fi\u015ftirmek, KF'li herkes i\u00e7in hayat kurtaran geli\u015fmeleri h\u0131zland\u0131rmak ve b\u00f6ylece KF'li her bireyin bu korkun\u00e7 hastal\u0131k taraf\u0131ndan k\u0131s\u0131tlanmadan hak ettikleri uzun, sa\u011fl\u0131kl\u0131 ve s\u0131n\u0131rs\u0131z gelece\u011fi ya\u015fayabilmesini sa\u011flamak i\u00e7in var.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Bu sene, <\/span><strong><a href=\"https:\/\/www.emilysentourage.org\/tr\/41for41\/\" target=\"_blank\" rel=\"noopener\">Emily 41 ya\u015f\u0131na girerken<\/a><\/strong><span style=\"font-weight: 400;\">, Sadece \u00fcstesinden geldi\u011fi \u015feyi kutlamak i\u00e7in de\u011fil, tamamen farkl\u0131 bir soru sormak i\u00e7in duruyoruz:<\/span><\/p>\n<p><b>\u0130leriyi g\u00f6rmeye cesaret edersek s\u0131rada ne var?<\/b><b><i>CF'nin \u00f6tesinde<\/i><\/b><b>?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">Bu do\u011fum g\u00fcn\u00fcnde, Emily'yi en iyi tan\u0131yan ki\u015filerden oraya gitmelerini ve cesaret etmelerini istedik <\/span><b>ileriye bak\u0131n<\/b><span style=\"font-weight: 400;\"> Bizimle birlikte.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A\u015fa\u011f\u0131da okuyacaklar\u0131n\u0131z, samimi, d\u00fcr\u00fcst ve \u00f6zlem dolu bu g\u00f6r\u00fcnt\u00fclerin bir derlemesidir. Fantezi olarak de\u011fil, neyin tehlikede oldu\u011funu ve neden her g\u00fcn deli gibi yar\u0131\u015ft\u0131\u011f\u0131m\u0131z\u0131 hat\u0131rlatmak i\u00e7in ve son 10%'deki her bir ki\u015fi i\u00e7in, KF'den ar\u0131nm\u0131\u015f o tek m\u00fckemmel g\u00fcn i\u00e7in<\/span><\/p>\n<hr>\n<h3><b>Jessica Rutstein Lazarus, PsyD<\/b><\/h3>\n<p><i><span style=\"font-weight: 400;\">Emily's Entourage Y\u00f6netim Kurulu \u00dcyesi ve Emily'nin Hayat Boyu En \u0130yi Arkada\u015f\u0131<\/span><\/i><\/p>\n<p><b><img fetchpriority=\"high\" decoding=\"async\" class=\"alignright wp-image-26008\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-1024x768.jpg\" alt=\"\" width=\"515\" height=\"386\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-1024x768.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-300x225.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-768x576.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-1536x1152.jpg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-2048x1536.jpg 2048w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-16x12.jpg 16w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-400x300.jpg 400w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/FullSizeRender-7-1-600x450.jpg 600w\" sizes=\"(max-width: 515px) 100vw, 515px\" \/>S: G\u00f6zlerinizi kapat\u0131n ve Emily'nin KF'den tamamen uzak ya\u015fad\u0131\u011f\u0131n\u0131 hayal edin - birlikte ge\u00e7irdi\u011finiz m\u00fckemmel bir g\u00fcn neye benzer?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: Emily ile hayat\u0131m\u0131n bir\u00e7ok d\u00f6n\u00fcm noktas\u0131n\u0131, \u00f6zel anlar\u0131 ve e\u011flenceli maceralar\u0131 payla\u015ft\u0131\u011f\u0131m i\u00e7in \u00e7ok \u015fansl\u0131y\u0131m. Birlikte ger\u00e7ekten m\u00fckemmele yak\u0131n hissetti\u011fimiz pek \u00e7ok g\u00fcn ge\u00e7irdik - sadece ak\u015fam yeme\u011fi yiyip saatlerce konu\u015fsak bile.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Ancak ger\u00e7ekten m\u00fckemmel olabilmesi i\u00e7in, KF ile ya\u015faman\u0131n getirdi\u011fi ek sorumluluklar\u0131 y\u00f6netmek zorunda kalmamas\u0131n\u0131 dilerdim - \u00e7evremizdeki ekstra sa\u011fl\u0131k risklerine kar\u015f\u0131 tetikte olmak, gece tedavilerini hesaba katmak i\u00e7in zamanlamaya dikkat etmek ve her karar\u0131 \u015fekillendiren t\u00fcm g\u00f6r\u00fcnmez hesaplamalar.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">M\u00fckemmel bir g\u00fcn hafif hissettirirdi. Y\u00fcks\u00fcz. Tedavi program\u0131nda bir sonraki ad\u0131m\u0131n ne olaca\u011f\u0131yla de\u011fil, i\u00e7inde bulundu\u011fumuz anla tan\u0131mlan\u0131r.<\/span><\/p>\n<p><b>S: Her zaman hayalini kurdu\u011fu ama KF nedeniyle yapamad\u0131\u011f\u0131 bir \u015feyi deneyimledi\u011fini g\u00f6rmeyi arzulad\u0131\u011f\u0131n\u0131z an nedir?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: Emily'nin spontanl\u0131\u011f\u0131n kolayl\u0131\u011f\u0131na sahip olmas\u0131n\u0131, an\u0131n i\u00e7inde s\u00fcr\u00fcklenmesini ve g\u00f6nl\u00fcnden ne ge\u00e7iyorsa onu yapmas\u0131n\u0131 arzuluyorum.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Tedavi ihtiya\u00e7lar\u0131n\u0131n a\u011f\u0131r zihinsel y\u00fck\u00fc olmadan yeni bir yere gidip gelebilmesini veya u\u00e7abilmesini \u00e7ok isterdim. Planlar\u0131 de\u011fi\u015ftirmek i\u00e7in. Planlar\u0131 uzat\u0131n. S\u00f6yle <\/span><i><span style=\"font-weight: 400;\">Evet.<\/span><\/i><span style=\"font-weight: 400;\"> Daha sonra v\u00fccuduna neye mal olaca\u011f\u0131n\u0131 kendine sormadan.<\/span><\/p>\n<hr>\n<h3><b>Coby Golinkoff<\/b><\/h3>\n<p><i><span style=\"font-weight: 400;\">Emily's Entourage Kurucu Orta\u011f\u0131 ve Emily'nin Karde\u015fi<\/span><\/i><\/p>\n<p><b><img decoding=\"async\" class=\"wp-image-26010 alignright\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-300x225.jpeg\" alt=\"\" width=\"515\" height=\"386\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-300x225.jpeg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-1024x768.jpeg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-768x576.jpeg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-1536x1152.jpeg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-2048x1536.jpeg 2048w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-16x12.jpeg 16w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-400x300.jpeg 400w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Coby-Photo-600x450.jpeg 600w\" sizes=\"(max-width: 515px) 100vw, 515px\" \/>S: G\u00f6zlerinizi kapat\u0131n ve Emily'nin KF'den tamamen uzak ya\u015fad\u0131\u011f\u0131n\u0131 hayal edin - birlikte ge\u00e7irdi\u011finiz m\u00fckemmel bir g\u00fcn neye benzer?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: G\u00fczel bir sahil kasabas\u0131nda olurduk - sakin ve b\u00fcy\u00fcleyici bir yerde, al\u0131\u015f\u0131lm\u0131\u015f\u0131n biraz d\u0131\u015f\u0131nda ve Ea'n\u0131n (Emily i\u00e7in takma ad\u0131m) dedi\u011fi gibi \u201cl\u00fcks granola\u201d.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">G\u00fcne \u201cyerlilerin gitti\u011fi\u201d kuytu bir kafede latte i\u00e7erek ba\u015flard\u0131k. Kasabada dola\u015f\u0131r, ard\u0131ndan temiz, tuzlu hava ve geni\u015f a\u00e7\u0131k manzaralarla dolu bir y\u00fcr\u00fcy\u00fc\u015fe \u00e7\u0131kard\u0131k. G\u00fczel bir manzara ke\u015ffeder, manzaray\u0131 takdir eder ve okyanus havas\u0131n\u0131n ci\u011ferlerimize dolmas\u0131na izin verirdik.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">G\u00fcn, hayat, aile dinamikleri, ki\u015filik tipleri, yeni bir fikir ortaya \u00e7\u0131karan en son podcast veya tart\u0131\u015ft\u0131\u011f\u0131m\u0131z bir verimlilik hilesi hakk\u0131nda derin ve tela\u015fs\u0131z sohbetlerle dolu olurdu. B\u00fcy\u00fck \u015feyler. K\u00fc\u00e7\u00fck ayr\u0131nt\u0131lar.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">G\u00fcn\u00fc aile oyunlar\u0131, derin kahkahalar ve lezzetli bir yemekle - yerel bir spesiyalite ise \u0131stakoz veya yenge\u00e7 - sonland\u0131r\u0131rd\u0131k.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Hepsinden \u00f6nemlisi, g\u00fcn \u00f6zg\u00fcrl\u00fckle tan\u0131mlanacakt\u0131. Solunum cihazlar\u0131, kat\u0131 tedavi programlar\u0131, \u00f6ks\u00fcr\u00fck n\u00f6betleri ya da s\u00fcrekli karbonhidrat ve kan \u015fekeri takibiyle k\u0131s\u0131tlanmadan.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sadece varl\u0131k. Ba\u011flant\u0131. Ne\u015fe.<\/span><\/p>\n<p><b>S: Onun deneyimledi\u011fini g\u00f6rmeyi arzulad\u0131\u011f\u0131n\u0131z bir an nedir?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: Ea'n\u0131n \u00f6zg\u00fcrce jet-set yapabilmesini, en sevdi\u011fi insanlarla birlikte d\u00fcnyan\u0131n her zaman g\u00f6rmeyi hayal etti\u011fi t\u00fcm g\u00fczel k\u00f6\u015felerini ke\u015ffedebilmesini \u00e7ok isterdim.<\/span><\/p>\n<hr>\n<h3><b>Marissa Nadel<\/b><\/h3>\n<p><i><span style=\"font-weight: 400;\">Emily'nin \u00dcniversitedeki En \u0130yi Arkada\u015f\u0131<\/span><\/i><\/p>\n<p><b><img decoding=\"async\" class=\"alignright wp-image-26013\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-225x300.jpg\" alt=\"\" width=\"386\" height=\"515\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-225x300.jpg 225w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-768x1024.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-1152x1536.jpg 1152w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-1536x2048.jpg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-9x12.jpg 9w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-600x800.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Marissa-Photo-scaled.jpg 1920w\" sizes=\"(max-width: 386px) 100vw, 386px\" \/>S: G\u00f6zlerinizi kapat\u0131n ve Emily'nin KF'den tamamen uzak ya\u015fad\u0131\u011f\u0131n\u0131 hayal edin - birlikte ge\u00e7irdi\u011finiz m\u00fckemmel bir g\u00fcn neye benzer?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: Emily'nin beni tekrar Los Angeles'ta ziyaret etmesini \u00e7ok isterdim - s\u0131n\u0131rs\u0131z, teredd\u00fcts\u00fcz, endi\u015fesiz.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Malibu Country Mart'a gider, sandvi\u00e7ler ve tabii ki siyah-beyaz kurabiyeler al\u0131r, ard\u0131ndan sahilde piknik yapmak i\u00e7in bir battaniye sererdik. Emily ayakkab\u0131lar\u0131n\u0131 \u00e7\u0131kar\u0131p do\u011fruca kuma ko\u015far, o\u011fullar\u0131m\u0131 kovalar, birlikte kumdan kaleler in\u015fa ederken g\u00fclerdi.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Volta atmak yok. Sadece varl\u0131k.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">G\u00fcn\u00fc elimizde dondurma, g\u00fcne\u015fin Pasifik'in alt\u0131na bat\u0131\u015f\u0131n\u0131 izleyerek, y\u00fczeyde basit gibi g\u00f6r\u00fcnen ama sizi tutan hi\u00e7bir \u015fey olmad\u0131\u011f\u0131nda her \u015fey demek olan bir an\u0131 ya\u015fayarak bitirirdik.<\/span><\/p>\n<p><b>S: Onun deneyimledi\u011fini g\u00f6rmeyi arzulad\u0131\u011f\u0131n\u0131z bir an nedir?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">A:<\/span> <span style=\"font-weight: 400;\">Emily Avrupa'y\u0131 her zaman sevmi\u015ftir ve onun G\u00fcney Fransa'da veya Amalfi Sahili'ndeki k\u00fc\u00e7\u00fck, b\u00fcy\u00fcleyici kasabalarda \u00f6zg\u00fcrce dola\u015ft\u0131\u011f\u0131n\u0131 g\u00f6rmeyi hayal ediyorum - g\u00fczelli\u011fi, yemekleri, k\u00fclt\u00fcr\u00fc ve d\u00fcnyay\u0131 s\u0131n\u0131rs\u0131zca ke\u015ffetmenin b\u00fcy\u00fcs\u00fcn\u00fc i\u00e7ine \u00e7ekerek.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Her k\u00f6\u015fesinin tad\u0131n\u0131 \u00e7\u0131karmas\u0131n\u0131 istiyorum - acele etmeden, y\u00fck olmadan ve tamamen mevcut olarak.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Bu gelece\u011fin ger\u00e7ek olmas\u0131 i\u00e7in ger\u00e7ekten dua ediyorum - bekledi\u011fi at\u0131l\u0131mlar\u0131n zaman\u0131nda gelmesi ve uzun zamand\u0131r hayalini kurdu\u011fu bu hayat\u0131 nihayet ya\u015famas\u0131 i\u00e7in.<\/span><\/p>\n<hr>\n<h3><b>Julia Kramer-Golinkoff<\/b><\/h3>\n<p><i><span style=\"font-weight: 400;\">Emily's Entourage Kurucu Orta\u011f\u0131 ve Emily'nin K\u0131z Karde\u015fi<\/span><\/i><\/p>\n<p><b><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-26015\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-300x225.jpg\" alt=\"\" width=\"515\" height=\"387\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-300x225.jpg 300w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-1024x769.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-768x577.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-1536x1154.jpg 1536w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-2048x1539.jpg 2048w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-16x12.jpg 16w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-400x300.jpg 400w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Julia-Photo-600x451.jpg 600w\" sizes=\"(max-width: 515px) 100vw, 515px\" \/>S: G\u00f6zlerinizi kapat\u0131n ve Emily'nin KF'den tamamen uzak ya\u015fad\u0131\u011f\u0131n\u0131 hayal edin - birlikte ge\u00e7irdi\u011finiz m\u00fckemmel bir g\u00fcn neye benzer?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">C: Emily ile m\u00fckemmel bir g\u00fcn hayal etti\u011fimde, bu b\u00fcy\u00fck ya da abart\u0131l\u0131 bir \u015fey olmuyor. Sabah kahveyle ba\u015flar\u0131z. Acele etmek yok. Altta yatan bir endi\u015fe yok. Belki g\u00fcn\u00fcn ilerleyen saatlerinde bir y\u00fcr\u00fcy\u00fc\u015fe \u00e7\u0131kar\u0131z - hatta manzaral\u0131 bir y\u00fcr\u00fcy\u00fc\u015fe - v\u00fccudunun neleri kald\u0131rabilece\u011fini ya da yan\u0131nda hangi ekipmanlar\u0131 getirmesi gerekti\u011fini hesaplamay\u0131 b\u0131rakmadan.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u00c7o\u011funlukla, sadece birlikte olurduk. Anlar\u0131 k\u0131sa kesen \u00f6ks\u00fcr\u00fck n\u00f6betleri yok. G\u00fcn\u00fcn enerjisini an\u0131nda de\u011fi\u015ftiren kan \u015fekeri korkusu yok. Oksijen t\u00fcpleri ya da bizi ger\u00e7ekli\u011fe geri \u00e7eken t\u0131bbi kesintiler yok.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sadece zaman. Sadece rahatl\u0131k. Sadece k\u0131z karde\u015fim - sa\u011fl\u0131\u011f\u0131 an\u0131n \u00f6n\u00fcne ge\u00e7meden, tamamen mevcut.<\/span><\/p>\n<p><b>S: Onun deneyimledi\u011fini g\u00f6rmeyi arzulad\u0131\u011f\u0131n\u0131z bir an nedir?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">A: Emily seyahat etmeyi seviyor. Maceray\u0131 ve yenilikleri seviyor. Her zaman yeni yerlere, yeni fikirlere ve ke\u015fif duygusuna ilgi duymu\u015ftur.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Y\u0131llar boyunca, KF'nin bu \u00f6zg\u00fcrl\u00fc\u011f\u00fc yava\u015f yava\u015f ondan almas\u0131n\u0131 izledim - sessiz, a\u015famal\u0131 ve ac\u0131 verici bir \u015fekilde.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Bir zamanlar m\u00fcmk\u00fcn g\u00f6r\u00fcnen planlar karma\u015f\u0131k gelmeye ba\u015flad\u0131. Sonra riskli. Sonra da ula\u015f\u0131lamaz.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">En \u00e7ok arzulad\u0131\u011f\u0131m \u015fey, o \u00f6zg\u00fcrl\u00fc\u011f\u00fc geri alaca\u011f\u0131 g\u00fcn. Korkmadan maceraya evet diyebilmesi.<\/span><\/p>\n<hr>\n<h3><b>Michelle Eber<\/b><\/h3>\n<p><i><span style=\"font-weight: 400;\">Emily'nin \u00dcniversitedeki En \u0130yi Arkada\u015f\u0131<\/span><\/i><\/p>\n<p><b><img loading=\"lazy\" decoding=\"async\" class=\"alignright wp-image-26016\" src=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-200x300.jpg\" alt=\"\" width=\"343\" height=\"515\" srcset=\"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-200x300.jpg 200w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-683x1024.jpg 683w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-768x1152.jpg 768w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-1024x1536.jpg 1024w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-1365x2048.jpg 1365w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-8x12.jpg 8w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-600x900.jpg 600w, https:\/\/www.emilysentourage.org\/wp-content\/uploads\/Michelle-Photo-scaled.jpg 1707w\" sizes=\"(max-width: 343px) 100vw, 343px\" \/>S: G\u00f6zlerinizi kapat\u0131n ve Emily'nin KF'den tamamen uzak ya\u015fad\u0131\u011f\u0131n\u0131 hayal edin - birlikte ge\u00e7irdi\u011finiz m\u00fckemmel bir g\u00fcn neye benzer?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">A: Akl\u0131mda, <\/span><span style=\"font-weight: 400;\">Emily hepimize geri d\u00f6nd\u00fc - hep birlikte, Penn'deki en iyi arkada\u015flar\u0131m\u0131zla yeniden bir araya geldik; her zaman olmam\u0131z gerekti\u011fi gibi.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Y\u00fckseklik veya oksijen seviyesini dikkate almadan g\u00fcne g\u00fczel bir manzaraya do\u011fru y\u00fcr\u00fcy\u00fc\u015f yaparak ba\u015flard\u0131k. \u201cYeterince g\u00fcvenli mi?\u201d diye d\u00fc\u015f\u00fcnmeden. Sadece gideriz.&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Daha sonra, \u00f6\u011fleden sonray\u0131 havuz kenar\u0131nda, g\u00fcne\u015fin alt\u0131nda uzanarak ve sadece uzun s\u00fcreli arkada\u015flar\u0131n yapabilece\u011fi \u015fekilde hayat\u0131 yakalayarak ge\u00e7irirdik. Emily'nin bitmek bilmeyen bir enerjisi olurdu. G\u00fcn hafifler, ne\u015fe ve sonsuz, histerik kahkahalarla dolard\u0131. <\/span><span style=\"font-weight: 400;\">&nbsp;<\/span><\/p>\n<p><b>S: Onun deneyimledi\u011fini g\u00f6rmeyi arzulad\u0131\u011f\u0131n\u0131z bir an nedir?<\/b><\/p>\n<p><span style=\"font-weight: 400;\">A:<\/span> <span style=\"font-weight: 400;\">Her \u015feyden \u00e7ok Emily'nin enerjisini s\u00fcrekli y\u00f6netmeden, tedavileri planlamadan veya sa\u011fl\u0131k aksakl\u0131klar\u0131na haz\u0131rl\u0131kl\u0131 olmadan her g\u00fcn\u00fcn\u00fc ba\u015fka t\u00fcrl\u00fc ya\u015fayabilece\u011fi kadar dolu dolu ya\u015fayabilmesini istiyorum.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">\u00dcniversiteli k\u0131zlar bulu\u015fma gezilerimize geri d\u00f6nmesini \u00e7ok istiyoruz. K\u0131s\u0131tlama olmaks\u0131z\u0131n gezme arzusuyla hareket etti\u011fini g\u00f6rmek istiyorum - uzak yerlere yeni maceralara at\u0131ld\u0131\u011f\u0131n\u0131.&nbsp;&nbsp;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Ani bir akci\u011fer kanamas\u0131 veya enfeksiyonun her \u015feyi engelleyebilece\u011fi korkusu olmadan g\u00fcnl\u00fck ya\u015fam\u0131na devam etti\u011fi bir gelece\u011fi \u00f6zl\u00fcyorum. G\u00fcnlerinin \u00f6nlemlerle de\u011fil olas\u0131l\u0131klarla tan\u0131mland\u0131\u011f\u0131 ve tek sorusunun bu oldu\u011fu bir gelecek, <\/span><i><span style=\"font-weight: 400;\">Bundan sonra ne yapmak istiyorum?<\/span><\/i><\/p>\n<p>&nbsp;<\/p>\n<hr>\n<h3><b>Neden Birlikte \u0130leriyi G\u00f6r\u00fcyoruz?<\/b><\/h3>\n<p><span style=\"font-weight: 400;\">Bu hayali g\u00fcnler \u015f\u0131mart\u0131c\u0131 r\u00fcyalar de\u011fil, EE i\u00e7in kuzey y\u0131ld\u0131zlar\u0131d\u0131r.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Nihai 10%'nin nelerden mahrum b\u0131rak\u0131ld\u0131\u011f\u0131n\u0131 ve nelere ula\u015fmak i\u00e7in canla ba\u015fla \u00e7al\u0131\u015ft\u0131\u011f\u0131m\u0131z\u0131 yans\u0131t\u0131yorlar<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Bize hayatta kalman\u0131n bir zafer oldu\u011funu hat\u0131rlat\u0131yorlar-<\/span><i><span style=\"font-weight: 400;\">ama ama\u00e7 \u00f6zg\u00fcrl\u00fckt\u00fcr.<\/span><\/i><\/p>\n<p><span style=\"font-weight: 400;\">#41for41 sadece 41 y\u0131ll\u0131k cesaret, azim ve meydan okumay\u0131 onurland\u0131rmakla ilgili de\u011fildir. Gelece\u011fi yaratmak i\u00e7in bir araya gelmekle ilgili <\/span><i><span style=\"font-weight: 400;\">CF'nin \u00f6tesinde<\/span><\/i><span style=\"font-weight: 400;\"> KF ile ya\u015fayan ve nefes alan her bir ki\u015fi i\u00e7in.<\/span><\/p>\n<p><b>\ud83d\udc9c <a href=\"https:\/\/www.emilysentourage.org\/tr\/41for41\/\" target=\"_blank\" rel=\"noopener\">Emily'nin 41. do\u011fum g\u00fcn\u00fc \u015ferefine $41 ba\u011f\u0131\u015f\u0131nda bulunun<\/a> ve onun -ve hala bekleyen herkesin- hayalini kurdu\u011fu ve hak etti\u011fi gelece\u011fin yarat\u0131lmas\u0131na yard\u0131mc\u0131 olmak.<\/b><\/p>\n<p style=\"text-align: center;\"><strong><a class=\"fasc-button fasc-size-large fasc-type-flat fasc-rounded-medium fasc-style-bold\" style=\"background-color: #462561; color: #ffffff;\" target=\"_blank\" rel=\"noopener\" href=\"https:\/\/www.emilysentourage.org\/tr\/41for41\/\">EMILY's 41 i\u00e7in $41 BA\u011eI\u015eTA BULUNUN<\/a><\/strong><\/p>","protected":false},"excerpt":{"rendered":"<p>Every birthday candle Emily lights has always meant more than another year older.&nbsp; It has meant another year here. Another year of navigating a disease that never rests. Another year of choosing hope, discipline, and grit\u2014sometimes quietly, sometimes defiantly\u2014just to keep going. For roughly 90% of people with cystic fibrosis (CF) who now benefit from&#8230; <\/p>\n<div class=\"clear\"><\/div>\n<p><a href=\"https:\/\/www.emilysentourage.org\/tr\/seeing-forward-imagining-a-future-without-limits-for-emily-and-the-final-10\/\" class=\"excerpt-read-more\">Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":1719,"featured_media":26024,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"none","_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1],"tags":[260,259,258,261,257],"class_list":["post-26005","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-41for41","tag-41-for-41","tag-cure-cf","tag-emily-41-birthday","tag-emily-birthday"],"acf":[],"jetpack_featured_media_url":"https:\/\/www.emilysentourage.org\/wp-content\/uploads\/41for41-Blog-Post-Featured-Image-2.png","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26005","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/users\/1719"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=26005"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26005\/revisions"}],"predecessor-version":[{"id":26021,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/26005\/revisions\/26021"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media\/26024"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=26005"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=26005"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=26005"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}