{"id":1767,"date":"2024-03-10T21:45:00","date_gmt":"2024-03-10T21:45:00","guid":{"rendered":"https:\/\/findpath.xyz\/?p=1767"},"modified":"2024-03-10T21:45:00","modified_gmt":"2024-03-10T21:45:00","slug":"a-baby-girl-who-never-stops-smiling-is-living-with-a-rare-skin-condition-that-makes-her-skin-crack","status":"publish","type":"post","link":"https:\/\/findpath.xyz\/?p=1767","title":{"rendered":"A Baby Girl Who \u2018Never Stops Smiling\u2019 Is Living With A Rare Skin Condition That Makes Her Skin Crack"},"content":{"rendered":"<p><strong>Jennie Wilklow claimed that everything went \u201cseemingly perfect\u201d during the September 2017 C-section delivery of her daughter Anna. But in a second, everything shifted.<\/strong><\/p><div class=\"311fe198f191a864c1efcdfa9efedfdf\" data-index=\"3\" style=\"float: none; margin:0px 0 0px 0; text-align:center;\">\n<div data-type=\"_mgwidget\" data-widget-id=\"1782571\">\r\n<\/div>\r\n<script>(function(w,q){w[q]=w[q]||[];w[q].push([\"_mgc.load\"])})(window,\"_mgq\");\r\n<\/script>\r\n\n<\/div>\n\n<p><strong>The 16-month-old is said to have been born with a disease that caused her skin to split open shortly after birth.<\/strong><\/p>\n<p><strong>\u201cMoments after her skin hit the air it began to harden and then split causing open wounds all over her body,\u201d<\/strong>\u00a0she told\u00a0<a href=\"https:\/\/people.com\/human-interest\/baby-takes-many-baths-skin-crack-harden\/\">People<\/a>.\u00a0<strong>\u201cFor months her skin had been building up but now out of the womb it became dry and hard, like armor.\u201d<\/strong><\/p>\n<p><strong>\u201cThe doctors and nurses were visibly shaken, and my husband sat silently in the post-op room,\u201d<\/strong> she added.<\/p>\n<p>According to the National Organization for Rare Disorders (NORD), the medical community quickly determined that Anna suffered from\u00a0<a href=\"https:\/\/rarediseases.org\/rare-diseases\/ichthyosis-harlequin-type\/\">Harlequin ichthyosis<\/a>, a rare skin ailment characterized by the presence of thick scales of skin on newborns. About one in every 500,000 people has it.<\/p>\n<p>Wilklow wrote to INSIDER that a diagnosis was made an hour after Anna was born and that she spent her first month of life in a hospital.<\/p>\n<p><iframe id=\"instagram-embed-0\" class=\"instagram-media instagram-media-rendered\" src=\"https:\/\/www.instagram.com\/p\/BtM9rNtAIgH\/embed\/?cr=1&amp;v=14&amp;wp=810&amp;rd=https%3A%2F%2Fdailypositiveinfo.com&amp;rp=%2Fa-baby-girl-who-never-stops-smiling-is-living-with-a-rare-skin-condition-that-makes-her-skin-crack%2F%3Ffbclid%3DIwAR2bQ2lcryJnNlDMdBqKLTEt8yPbGKQNhRsmfavme_U3WICwgexgeSK_jD4#%7B%22ci%22%3A0%2C%22os%22%3A5007.399999856949%2C%22ls%22%3A751.7999999523163%2C%22le%22%3A4585.399999856949%7D\" height=\"693\" frameborder=\"0\" scrolling=\"no\" allowfullscreen=\"allowfullscreen\" data-instgrm-payload-id=\"instagram-media-payload-0\" data-mce-fragment=\"1\"><\/iframe><\/p>\n<p><strong>\u201cMy reaction was just complete shock because just a few minutes before I thought I was having a perfectly healthy baby girl,\u201d<\/strong>\u00a0she told INSIDER.\u00a0<strong>\u201cIt\u2019s the kind of moment that stays with you forever and reminds you every day just how precious life is.\u201d<\/strong><\/p>\n<p>According to the Genetic and Rare Disease Information Center (GARD), mutations in the ABCA12gene, which provides instructions for manufacturing a protein essential for proper skin cell growth, are the underlying cause of Harlequin ichthyosis.<\/p>\n<p>Affected individuals receive two copies of the defective gene, one from each parent.<\/p>\n<p>The infant\u2019s skin is thick and scaled from birth. According to NORD, a baby may have trouble breathing and feeding due to the tightness of their skin, which can also cause their lips and eyelids to turn inside out from being pulled on.<\/p>\n<p>Babies born with Harlequin ichthyosis are more likely to be premature and to experience health problems like infection, dehydration, and respiratory distress.<\/p>\n<p>According to the NORD, the thick skin scales fall off over the first several weeks of life.<\/p>\n<p>According to People\u2019s report, in the past, kids born with this disease had a low chance of survival. According to the\u00a0<a href=\"https:\/\/www.firstskinfoundation.org\/types-of-ichthyosis\/harlequin-ichthyosis\">Foundation for Ichthyosis and Related Skin Types (FIRST)<\/a>, improved neonatal care has increased survivability, and\u00a0<strong>\u201cseveral\u201d<\/strong>\u00a0people with Harlequin ichthyosis are now living into their thirties. However, not all babies born with the disease make it.<\/p>\n<p><iframe id=\"instagram-embed-1\" class=\"instagram-media instagram-media-rendered\" src=\"https:\/\/www.instagram.com\/p\/BzuC0qbAdJz\/embed\/?cr=1&amp;v=14&amp;wp=810&amp;rd=https%3A%2F%2Fdailypositiveinfo.com&amp;rp=%2Fa-baby-girl-who-never-stops-smiling-is-living-with-a-rare-skin-condition-that-makes-her-skin-crack%2F%3Ffbclid%3DIwAR2bQ2lcryJnNlDMdBqKLTEt8yPbGKQNhRsmfavme_U3WICwgexgeSK_jD4#%7B%22ci%22%3A1%2C%22os%22%3A5068.5%2C%22ls%22%3A751.7999999523163%2C%22le%22%3A4585.399999856949%7D\" height=\"747\" frameborder=\"0\" scrolling=\"no\" allowfullscreen=\"allowfullscreen\" data-instgrm-payload-id=\"instagram-media-payload-1\" data-mce-fragment=\"1\"><\/iframe><\/p>\n<p>The skin is red and can be coated in thin scales once the thick scales that were present at birth have fallen off.<\/p>\n<p>Emollients, which help keep the skin moist and prevent cracks that can lead to infection, are recommended by the NORD for the treatment of these chronic problems.<\/p>\n<p>According to\u00a0<a href=\"https:\/\/people.com\/human-interest\/baby-takes-many-baths-skin-crack-harden\/\">People<\/a>, Wilklow bathes Anna for two hours many times a day and applies Aquaphor, a healing ointment, to her skin every few hours to prevent her skin from splitting.<\/p>\n<p>Because her body creates so much extra skin, Anna needs to eat roughly 2,100 calories every day, according to People\u2019s story.<\/p>\n<p><strong>\u201cI decided to stop work and stay home with her full time to give her everything she needs and I couldn\u2019t be happier with my decision,\u201d<\/strong>\u00a0Wilklow told People.\u00a0<strong>\u201cShe has a lot of challenges, but she never complains so neither do I.\u201d<\/strong><\/p>\n<p>According to People, a family friend started a\u00a0<a href=\"https:\/\/www.gofundme.com\/f\/t6ag8d-hope-for-anna\">GoFundMe<\/a>\u00a0to collect money for Anna\u2019s medical needs after Wilklow quit her job to care for her. Over $10,000 has been contributed as of this writing.<\/p>\n<p>Anna has won the hearts of tens of thousands of people online. The family keeps up an Instagram account (username:\u00a0<a href=\"https:\/\/www.instagram.com\/harlequindiva\/\">A Baby Girl Who \u2018Never Stops Smiling\u2019 Is Living With A Rare Skin Condition That Makes Her Skin Crack<\/a>) with over 24,000 followers, and a Facebook page (named\u00a0<strong>\u201c<a href=\"https:\/\/www.facebook.com\/hopeforanna\/\">Hope for Anna<\/a>\u201c<\/strong>) with 48,000 likes.<\/p>\n<p>There are pictures and videos of Anna eating, playing, and smiling on every page. Other pictures show Anna\u2019s skincare routine and the symptoms she experiences with her skin.<\/p>\n<p>Wilklow told INSIDER that she created the\u00a0<strong>\u201cHope for Anna\u201d<\/strong>\u00a0page while Anna was still in the NICU shortly after her delivery.<\/p>\n<p><iframe id=\"instagram-embed-2\" class=\"instagram-media instagram-media-rendered\" src=\"https:\/\/www.instagram.com\/p\/BzRGoA3gH8O\/embed\/?cr=1&amp;v=14&amp;wp=810&amp;rd=https%3A%2F%2Fdailypositiveinfo.com&amp;rp=%2Fa-baby-girl-who-never-stops-smiling-is-living-with-a-rare-skin-condition-that-makes-her-skin-crack%2F%3Ffbclid%3DIwAR2bQ2lcryJnNlDMdBqKLTEt8yPbGKQNhRsmfavme_U3WICwgexgeSK_jD4#%7B%22ci%22%3A2%2C%22os%22%3A5086.799999952316%2C%22ls%22%3A751.7999999523163%2C%22le%22%3A4585.399999856949%7D\" height=\"882\" frameborder=\"0\" scrolling=\"no\" allowfullscreen=\"allowfullscreen\" data-instgrm-payload-id=\"instagram-media-payload-2\" data-mce-fragment=\"1\"><\/iframe><\/p>\n<p><strong>\u201cI started [it] mainly to update my incredible community and not to flood my personal page,\u201d<\/strong>\u00a0she told INSIDER.\u00a0<strong>\u201cIt turned into much more than that when I shared a side by side video [showing Anna when] she was in the hospital and the other was a few months later. The hospital video went viral, but something about Anna\u2019s soul has touched people from the very moment she opened her eyes.\u201d<\/strong><\/p>\n\n<div style=\"font-size: 0px; height: 0px; line-height: 0px; margin: 0; padding: 0; clear: both;\"><\/div>","protected":false},"excerpt":{"rendered":"<p>Jennie Wilklow claimed that everything went \u201cseemingly perfect\u201d during the September 2017 C-section delivery of her daughter Anna. But in a second, everything shifted. The 16-month-old is&#8230; <\/p>\n","protected":false},"author":1,"featured_media":1768,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1767","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1767","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/findpath.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1767"}],"version-history":[{"count":1,"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1767\/revisions"}],"predecessor-version":[{"id":1769,"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/posts\/1767\/revisions\/1769"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/findpath.xyz\/index.php?rest_route=\/wp\/v2\/media\/1768"}],"wp:attachment":[{"href":"https:\/\/findpath.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1767"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/findpath.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=1767"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/findpath.xyz\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=1767"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}