{"id":7109,"date":"2021-12-08T21:35:59","date_gmt":"2021-12-08T21:35:59","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=7109"},"modified":"2023-09-15T07:11:17","modified_gmt":"2023-09-15T11:11:17","slug":"living-with-aadc-deficiency-meet-the-heger-family","status":"publish","type":"post","link":"https:\/\/www.ptcbio.com\/posts\/living-with-aadc-deficiency-meet-the-heger-family\/","title":{"rendered":"Living with AADC Deficiency \u2013 Meet the Heger Family"},"content":{"rendered":"<div class=\"core-block classic-block wysiwyg wysiwyg--pure\"><p>Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare fatal pediatric disorder, over 26 years ago. Kelly was determined to understand the complicated medical language used by her daughter\u2019s doctors and to play a pivotal role in the round-the-clock medical care Jillian requires.<\/p>\n<p>In the video below, Kelly and her husband Bruce share their family\u2019s AADCd story, giving insights into their daughter\u2019s diagnosis journey, how they always ensure Jillian is included in the precious moments that make up family life and share some words of wisdom, motivation and inspiration for other AADCd families.<\/p>\n<p><\/p>\n\n<\/div>\n<center><iframe loading=\"lazy\" width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/uK5iIEK2gHs?si=YUSnC1d3uUp7RdTK\" title=\"YouTube video player\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/center>\n","protected":false},"excerpt":{"rendered":"<p>Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare fatal pediatric disorder, over 26 years ago. Kelly was determined to understand the complicated medical language used by her daughter\u2019s doctors and to play a pivotal role in the round-the-clock medical care&hellip;<\/p>\n","protected":false},"author":1,"featured_media":9480,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[19],"tags":[],"media-type":[12],"therapeutic-area":[18],"class_list":["post-7109","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.5 (Yoast SEO v27.5) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Living with AADC Deficiency \u2013 Meet the Heger Family - PTC Therapeutics (United States)<\/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:\/\/www.ptcbio.com\/posts\/living-with-aadc-deficiency-meet-the-heger-family\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Living with AADC Deficiency \u2013 Meet the Heger Family\" \/>\n<meta property=\"og:description\" content=\"Kelly Heger went back to school and trained as a nurse after her daughter Jillian was diagnosed with AADC deficiency (AADCd), a rare fatal pediatric disorder, over 26 years ago. 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