{"id":963,"date":"2015-01-20T17:36:14","date_gmt":"2015-01-20T17:36:14","guid":{"rendered":"http:\/\/www.myface.org?p=963"},"modified":"2017-04-12T16:25:37","modified_gmt":"2017-04-12T20:25:37","slug":"inspiring-story-of-a-girl-born-with-pfeiffer-syndrome","status":"publish","type":"post","link":"https:\/\/www.myface.org\/es\/inspiring-story-of-a-girl-born-with-pfeiffer-syndrome\/","title":{"rendered":"I am Ellie"},"content":{"rendered":"<p><strong>By Ellie<\/strong><\/p>\n<p>My name is Ellie, I\u2019m 16 years old and I was born with a craniofacial syndrome called Pfeiffer Syndrome. Because of this, I\u2019ve had multiple surgeries on my skull and face, I had a trach for 6 years and I\u2019ve worn a hearing-aid my entire life.<\/p>\n<p>At exactly one week old, I had my first surgery to remove the back half of my skull to give my brain room to grow. I\u2019ve had lots of surgeries since then, and I\u2019ll have a few more before I\u2019m done. That\u2019s not what\u2019s interesting, though.<\/p>\n<p><center><img decoding=\"async\" src=\"http:\/\/www.myface.org\/wp-content\/uploads\/2016\/08\/FullSizeRender.jpg\" alt=\"myFace's Patient Ellie\" \/><\/center>What\u2019s interesting is me. If you ever meet me, be warned: I\u2019m a pretty quirky person. I can\u2019t eat ice cream until it\u2019s dark out, I love old cars, I\u2019m really sarcastic and I\u2019m a storyteller.<\/p>\n<p>All my life, people have told me I\u2019m brave, I\u2019m strong, I\u2019m tough and so on. They tell me they\u2019re sorry and they wonder about the \u201cmaturity\u201d of others with medical conditions.<br \/>\nBut, I\u2019m not sorry. I love my life, medical condition or not, and I don\u2019t like being called brave. I get scared every time I walk into a hospital and I have panic attacks before a surgery. It\u2019s not bravery, it\u2019s life.<\/p>\n<p><center><img decoding=\"async\" src=\"http:\/\/www.myface.org\/wp-content\/uploads\/2016\/08\/IMG_4935.jpg\" alt=\"myFace's Patient Ellie closed image\" \/><\/center><\/p>\n<p>Pfeiffer Syndrome isn&#8217;t a \u201ccondition.\u201d It\u2019s a reality, and those of us with medical conditions know and realize more than people think we do. We may not know everything, but we do know our reality.<\/p>\n<p>At Christmas, I played harp for a concert. Afterwards, a lady (let\u2019s call her Sue) came up and told me that she was glad that I look different. Sue told me how she had had a childhood friend with a facial abnormality and how that friend never put herself out there and always let her face come before her life. But there I was, playing harp like the world didn\u2019t exist. She thanked me for playing harp and for looking different.<\/p>\n<p>I can\u2019t put into words how amazed I was. People always dodge the fact that I do look different. I\u2019ve brought it up before, just to test the waters, and the topic gets shot down pretty quickly. Sue, coming up and thanking me for being me, was beyond amazing and heartwarming and I cherish that memory.<\/p>\n<p>I would rather live a life with hospitals and doctors, funny glances and skirted conversations, playing harp and connecting with people like Sue, than without. I define my experience as life. Because in the end, that\u2019s all it is: Ellie\u2019s awesome life. \ud83d\ude42<\/p>","protected":false},"excerpt":{"rendered":"<p>By Ellie My name is Ellie, I\u2019m 16 years old and I was born with a craniofacial syndrome called Pfeiffer Syndrome. Because of this, I\u2019ve had multiple surgeries on my skull and face, I had a trach for 6 years and I\u2019ve worn a hearing-aid my entire life. At exactly<\/p>\n<p><a class=\"sd-more sd-all-trans\" href=\"https:\/\/www.myface.org\/es\/inspiring-story-of-a-girl-born-with-pfeiffer-syndrome\/#more-963\">Leer m\u00e1s<\/a><\/p>","protected":false},"author":1,"featured_media":2030,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[30],"tags":[45,35,138,74,75,201,163,146,55,84,93],"class_list":["post-963","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spotlights","tag-craniofacial","tag-craniofacial-conditions","tag-craniofacial-difference","tag-craniofacial-plastic-surgery","tag-craniofacial-surgery","tag-facial-difference","tag-inspiring-stories","tag-inspiring-story-of-transforming-life","tag-myface","tag-pfeiffer-syndrome","tag-stories"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Inspiring Story of a Girl Born with Pfeiffer Syndrome | myFace<\/title>\n<meta name=\"description\" content=\"My name is Ellie, I\u2019m 16 years old and I was born with a craniofacial syndrome called Pfeiffer Syndrome. 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