{"id":16347,"date":"2024-09-17T14:32:29","date_gmt":"2024-09-17T18:32:29","guid":{"rendered":"https:\/\/www.ptcbio.com\/?p=16347"},"modified":"2024-09-17T14:32:29","modified_gmt":"2024-09-17T18:32:29","slug":"kailey-is-thankful-for-her-family","status":"publish","type":"post","link":"https:\/\/panel.ptcbio.com\/es\/2024\/09\/17\/kailey-is-thankful-for-her-family\/","title":{"rendered":"Kailey is Thankful for her FAmily"},"content":{"rendered":"\n<figure class=\"wp-block-image alignright size-full is-resized is-style-lightbox\"><img decoding=\"async\" src=\"https:\/\/www.ptcbio.com\/wp-content\/uploads\/sites\/2\/2024\/09\/DSC_1008-scaled.jpg\" alt=\"Kailey Newcity \" class=\"wp-image-16333\" style=\"width:285px;height:auto\"\/><button class=\"modal-toggle\" type=\"button\" data-bs-toggle=\"modal\" data-bs-target=\"#mg-image-modal\" aria-label=\"View image in lightbox\"><\/button><\/figure>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\"><em>Kailey Newcity lives with Friedreich&#8217;s ataxia (FA) and strives to shine a spotlight on this rare disease. She has shared her story with PTC to help spread awareness about FA.<\/em><\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">\u201cClumsiness has always been a part of my life. Friends &amp; family joked when I was growing up that my name should\u2019ve been Grace.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">At age 23, I began experiencing some symptoms that were very obviously something besides \u201cjust Kailey stuff.\u201d I started having silly falls, racing heartbeat, extreme fatigue. This began a four-year long journey for answers. Two years in, I thought I had my answer after endless bloodwork, MRI\u2019s, EMG\u2019s, a spinal tap, and genetic testing that insurance deemed \u201cnot medically necessary.\u201d<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">For two years, I thought I had a different (less severe, non-life shortening) neuromuscular disease. Finally in 2017, a doctor at the MDA correctly diagnosed me with Friedreich\u2019s Ataxia. My life has been a rollercoaster of symptoms, medication trials, new friends, and doctor\u2019s appointments ever since.<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">I am very lucky to be late diagnosed, as I was able to live a relatively \u2018normal\u2019 life for 23 years. I had a few years of denial &amp; grief of the life I had planned for myself before I knew what FA was. I have met some of the greatest people in the world through this community and I am lucky enough to be on a treatment for FA. I will continue to raise awareness and funds and hope that I am around to see the end of this ugly disease. Cure FA!&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph core-block core-paragraph\">I am extremely grateful for this incredible community and the people that have become my family through FA. We share a bond that nobody wants but without the understanding and support of this FAmily, I would be very lost.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Kailey is grateful for the Friedreich&#8217;s ataxia community and strives to raise awareness of FA.<\/p>\n","protected":false},"author":0,"featured_media":16342,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[5,6],"tags":[],"media-type":[20],"therapeutic-area":[31],"class_list":["post-16347","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-disease-community","category-rare-journeys"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.9 (Yoast SEO v27.9) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Kailey is Thankful for her FAmily - PTC Therapeutics (Spain)<\/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:\/\/panel.ptcbio.com\/es\/2024\/09\/17\/kailey-is-thankful-for-her-family\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Kailey is Thankful for her FAmily\" \/>\n<meta property=\"og:description\" content=\"Kailey is grateful for the Friedreich&#039;s ataxia community and strives to raise awareness of FA.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/panel.ptcbio.com\/es\/2024\/09\/17\/kailey-is-thankful-for-her-family\/\" \/>\n<meta property=\"og:site_name\" content=\"PTC Therapeutics (Spain)\" \/>\n<meta property=\"article:published_time\" content=\"2024-09-17T18:32:29+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/panel.ptcbio.com\/es\/wp-content\/uploads\/sites\/20\/2024\/09\/Kailey-FA.png\" \/>\n\t<meta property=\"og:image:width\" content=\"466\" \/>\n\t<meta property=\"og:image:height\" content=\"262\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/\"},\"author\":{\"name\":\"\",\"@id\":\"\"},\"headline\":\"Kailey is Thankful for her FAmily\",\"datePublished\":\"2024-09-17T18:32:29+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/\"},\"wordCount\":303,\"publisher\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/wp-content\\\/uploads\\\/sites\\\/20\\\/2024\\\/09\\\/Kailey-FA.png\",\"articleSection\":[\"Rare Disease Community\",\"Rare Journeys\"],\"inLanguage\":\"es\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/\",\"url\":\"https:\\\/\\\/panel.ptcbio.com\\\/es\\\/2024\\\/09\\\/17\\\/kailey-is-thankful-for-her-family\\\/\",\"name\":\"Kailey is Thankful for her FAmily - 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