{"id":1307,"date":"2013-05-12T11:01:11","date_gmt":"2013-05-12T18:01:11","guid":{"rendered":"http:\/\/lw.screammedia.net\/?p=1307"},"modified":"2023-12-20T04:19:13","modified_gmt":"2023-12-20T09:19:13","slug":"guest-post-getting-to-know-emily-and-her-life-without-regret","status":"publish","type":"post","link":"https:\/\/www.emilysentourage.org\/tr\/guest-post-getting-to-know-emily-and-her-life-without-regret\/","title":{"rendered":"Konuk Yaz\u0131s\u0131: Emily'yi ve pi\u015fmanl\u0131k duymad\u0131\u011f\u0131 hayat\u0131n\u0131 tan\u0131mak"},"content":{"rendered":"

May\u0131s ay\u0131ndaki KF Fark\u0131ndal\u0131k Ay\u0131 kapsam\u0131nda, serbest yazar ve KF Derne\u011fi \u00fcyesi Jessie Stein Diamond Emily's Entourage Y\u00f6netim Kurulu<\/a>Emily'yi tan\u0131mak, zaman\u0131n de\u011feri ve pi\u015fmanl\u0131k duymadan ya\u015famak hakk\u0131nda ald\u0131\u011f\u0131 dersler hakk\u0131nda yaz\u0131yor.\u00a0<\/em><\/p>\n

Minyon, hassas ve 28 ya\u015f\u0131n\u0131n \u00f6tesinde bilge - Emily's Entourage'dan Emily, zaman\u0131n de\u011ferine olan takdirimi sonsuza dek de\u011fi\u015ftirdi. Emily's Entourage y\u00f6netim kurulu \u00fcyesi olarak onu tan\u0131ma \u015fans\u0131na sahip oldum ve son \u00e7evrimi\u00e7i yaz\u0131\u015fmalar\u0131m\u0131zdan birka\u00e7 i\u00e7g\u00f6r\u00fcy\u00fc payla\u015fmak istiyorum:<\/p>\n

\"Elimden gelen her \u015feyi yapt\u0131\u011f\u0131m\u0131, hayata ve Kistik Fibrozis'e elimden gelenin en iyisini yapt\u0131\u011f\u0131m\u0131 bilerek b\u00fcy\u00fck bir huzur ve rahatl\u0131k buluyorum. Hepimizin yapabilece\u011fi tek \u015fey bu - bize verilen desteyi almak ve elimizden gelenin en iyisini yapmak. Kistik Fibrozis konusunda \u015fans\u0131m yaver gitmemi\u015f olsa da, hayat\u0131n di\u011fer pek \u00e7ok alan\u0131nda \u015fans\u0131m yaver gitti. Bu tan\u0131ma ve takdir benim i\u00e7in bir milisaniye bile kaybolmad\u0131. Asla.\"<\/p>\n

KF'li ki\u015filerin ortalama ya\u015fam s\u00fcresi 30'lu ya\u015flar\u0131n ortalar\u0131nda. Buna ra\u011fmen veya belki de k\u0131smen bu nedenle 28 ya\u015f\u0131ndaki Emily dolu dolu ya\u015f\u0131yor. Arkada\u015flar\u0131n\u0131 ve ailesini \u00e7ok seviyor ve onlar taraf\u0131ndan \u00e7ok seviliyor, yeni bilgi ve deneyimlere olan a\u00e7l\u0131\u011f\u0131n\u0131 sa\u011fl\u0131k hizmetleri pazarlamas\u0131nda \u00e7al\u0131\u015farak ve yak\u0131n zamanda biyoetik alan\u0131nda y\u00fcksek lisans\u0131n\u0131 tamamlayarak gideriyor. Bir \u015fekilde t\u00fcm bunlar\u0131 ve daha fazlas\u0131n\u0131, KF'nin y\u00f6netimi i\u00e7in hava yolu temizli\u011fi ve solunum tedavilerine ay\u0131rd\u0131\u011f\u0131 g\u00fcnl\u00fck \u00fc\u00e7 ila d\u00f6rt saate s\u0131\u011fd\u0131rmay\u0131 ba\u015far\u0131yor - ve bu sa\u011fl\u0131kl\u0131 oldu\u011fu zamanlar.<\/p>\n

Emily's Entourage y\u00f6netim kuruluna (ve kendi arkada\u015flar\u0131m\u0131za ve ailelerimize) KF i\u00e7in ara\u015ft\u0131rma ve tedavileri h\u0131zland\u0131rmak \u00fczere para toplamaya yard\u0131mc\u0131 olmak i\u00e7in ilham verdi.<\/p>\n

Emily bizim i\u00e7in \u00e7ok de\u011ferli.<\/p>\n

Zaman onun i\u00e7in \u00e7ok de\u011ferli.<\/p>\n

Onun gibi KF hastas\u0131 olan di\u011fer insanlar\u0131n da ayn\u0131 derecede sevildi\u011finin fark\u0131nday\u0131z. Bu y\u00fczden tedaviyi h\u0131zland\u0131rmak i\u00e7in elimizden gelen her \u015feyi yapmaya haz\u0131r\u0131z.<\/p>\n

Pi\u015fmanl\u0131k duymadan bir hayat ya\u015famak hepimiz i\u00e7in cesaret ve azim gerektirir. Ama Emily bunu bamba\u015fka bir seviyeye ta\u015f\u0131yor.<\/p>\n

D\u00fcnyan\u0131n Emily'nin yeteneklerine ve bilgeli\u011fine ihtiyac\u0131 var. Emily'nin akci\u011fer nakli gibi son evre tedavileri engellemeye yard\u0131mc\u0131 olacak terap\u00f6tiklere ihtiyac\u0131 var.<\/p>\n

Siz ve ben bu tedavileri ger\u00e7e\u011fe d\u00f6n\u00fc\u015ft\u00fcrebilecek ki\u015fileriz. \u0130\u015fte bu y\u00fczden Emily's Entourage'a kat\u0131ld\u0131m. Ve i\u015fte bu y\u00fczden, e\u011fer hen\u00fcz kat\u0131lmad\u0131ysan\u0131z, sizi de kat\u0131lmaya te\u015fvik ediyorum - zaman\u0131n \u00e7ok \u00f6nemli oldu\u011fu ve pi\u015fmanl\u0131\u011fa yer olmayan bir ya\u015fam\u0131 onurland\u0131rmak i\u00e7in.<\/div>\n

- Jessie Stein Diamond<\/p>\n

May\u0131s ay\u0131 boyunca, EE g\u00fcncellemelerini payla\u015farak KF hakk\u0131nda fark\u0131ndal\u0131k yaratmam\u0131za yard\u0131mc\u0131 olun\u00a0Facebook<\/a>, Twitter<\/a>\u00a0ve\u00a0Instagram<\/a>!<\/em><\/p>","protected":false},"excerpt":{"rendered":"

As part of CF Awareness Month in May, Jessie Stein Diamond, a freelance writer and member of the Emily’s Entourage Board of Directors, writes about getting to know Emily and lessons she has learned about the value of time and living with no regrets.\u00a0 Petite, precise and wise beyond her 28 years \u2013 Emily of… <\/p>\n

<\/div>\n

Daha fazla bilgi edinin<\/a><\/p>","protected":false},"author":58,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_seopress_robots_primary_cat":"","_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":[1,6],"tags":[],"class_list":["post-1307","post","type-post","status-publish","format-standard","hentry","category-uncategorized","category-emilys-entourage-blog"],"acf":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1307","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\/58"}],"replies":[{"embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/comments?post=1307"}],"version-history":[{"count":5,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1307\/revisions"}],"predecessor-version":[{"id":20410,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/posts\/1307\/revisions\/20410"}],"wp:attachment":[{"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/media?parent=1307"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/categories?post=1307"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.emilysentourage.org\/tr\/wp-json\/wp\/v2\/tags?post=1307"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}