{"id":75602,"date":"2015-10-04T15:51:30","date_gmt":"2015-10-04T19:51:30","guid":{"rendered":"\/news\/?p=75602"},"modified":"2015-10-03T14:22:36","modified_gmt":"2015-10-03T18:22:36","slug":"australian-girl-given-one-year-live-defies-odds","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/australian-girl-given-one-year-live-defies-odds\/","title":{"rendered":"Australian girl given one year to live defies the odds"},"content":{"rendered":"<div style=\"margin-top: 0px; margin-bottom: 0px;\" class=\"sharethis-inline-share-buttons\" ><\/div><p>Four-year-old Isabela Corstorphan was diagnosed at four months old with an extremely rare condition of dwarfism called Rhizomelic Chondrodysplasia Punctata or RCDP. RCDP causes growth deficiency, mental deficiency, seizures, stiff and painful joints, respiratory problems, cataracts, heart issues, and other symptoms. The main factor is low levels of plasmalogen, a fatty acid. Isabela was given just a year to live, but she\u2019s fighting those odds.<\/p>\n<p>\u201cYou\u2019re very lucky to reach four or five years old,\u201d Isabela\u2019s mother Angelina Corstorphan told <a href=\"https:\/\/au.news.yahoo.com\/video\/watch\/29649411\/aussie-girl-with-rare-illness-defies-the-odds\/\">7 News<\/a>. \u201cSo I\u2019m one of the lucky few who\u2019s still got my angel here.\u201d<\/p>\n<p><!--more-->Isabela is the only child known to have RCDP in Australia, and she\u2019s one of less than 100 known cases in the world. In her four years of life, Isabela has endured over 10 surgeries including spinal surgery and eye surgery. She also undergoes countless tests, speech therapy, occupational and physical therapy, and round the clock care from her devoted mother who refused hospice for her daughter and instead chose to fight for Isabela\u2019s life.<\/p>\n<p>\u201cIt was a tough first few months. No one had ever seen this condition before. No one had ever heard of it,\u201d Corstorphan\u00a0said.<\/p>\n<p>Despite the fact that there is no financial benefit for researchers and pharmaceutical companies to work towards finding a cure since the RCDP population is so small, one scientist, Dr. Nancy Braverman, has worked for decades studying RCDP. She <a href=\"http:\/\/www.nytimes.com\/2015\/09\/07\/us\/flicker-of-hope-for-children-with-rare-and-devastating-disease.html?_r=0\">recently convinced<\/a> a biotech company from Canada, Phenomenome Discoveries, to take part in a clinical trial to increase plasmalogen levels in these children in hopes of improving symptoms and prolonging their lives. The trial is set to begin next year.<\/p>\n<div id=\"attachment_75606\" style=\"width: 484px\" class=\"wp-caption aligncenter\"><img aria-describedby=\"caption-attachment-75606\" decoding=\"async\" loading=\"lazy\" class=\"wp-image-75606 size-large\" src=\"https:\/\/www.liveactionnews.org\/wp-content\/uploads\/2015\/09\/Isabela-2-700x700.jpg\" alt=\"Angelina and Isabela Corstorphan\" width=\"474\" height=\"474\" srcset=\"https:\/\/archive.liveaction.org\/news\/wp-content\/uploads\/2015\/09\/Isabela-2-700x700.jpg 700w, https:\/\/archive.liveaction.org\/news\/wp-content\/uploads\/2015\/09\/Isabela-2-150x150.jpg 150w, https:\/\/archive.liveaction.org\/news\/wp-content\/uploads\/2015\/09\/Isabela-2-300x300.jpg 300w, https:\/\/archive.liveaction.org\/news\/wp-content\/uploads\/2015\/09\/Isabela-2.jpg 960w\" sizes=\"(max-width: 474px) 100vw, 474px\" \/><p id=\"caption-attachment-75606\" class=\"wp-caption-text\">Angelina and Isabela Corstorphan from Go Fund Me.<\/p><\/div>\n<p>Despite her delayed development and the fact that she likely won\u2019t ever sit on her own or learn to walk, Isabela has a beautiful, bright smile. And she loves music.<\/p>\n<p>\u201cI\u2019m sure if she could, if she could stand, she would always be dancing,\u201d said Corstorphan. \u201cIf she could talk, she\u2019d always be singing.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Four-year-old Isabela Corstorphan was diagnosed at four months old with an extremely rare condition of dwarfism called Rhizomelic Chondrodysplasia Punctata or RCDP. RCDP causes growth deficiency, mental deficiency, seizures, stiff and painful joints, respiratory problems, cataracts, heart issues, and other symptoms. The main factor is low levels of plasmalogen, a fatty acid. Isabela was given [&hellip;]<\/p>\n","protected":false},"author":62,"featured_media":75624,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false},"categories":[4],"tags":[5368,5369,3468,5367,5366],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v20.7 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Australian girl given one year to live defies the odds<\/title>\n<meta name=\"description\" content=\"Four-year-old Isabela Corstorphan was diagnosed at four months old with an extremely rare condition of dwarfism and was given one year to live.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/archive.liveaction.org\/news\/australian-girl-given-one-year-live-defies-odds\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" 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