{"id":38996,"date":"2026-03-25T00:42:41","date_gmt":"2026-03-24T16:42:41","guid":{"rendered":"https:\/\/sgbuzz.com\/?p=38996"},"modified":"2026-03-25T00:42:41","modified_gmt":"2026-03-24T16:42:41","slug":"their-baby-was-diagnosed-with-rare-disorder-requiring-1-8-m-treatment-what-happened-next-shocked-them","status":"publish","type":"post","link":"https:\/\/sgbuzz.com\/?p=38996","title":{"rendered":"Their Baby Was Diagnosed with Rare Disorder Requiring $1.8 M Treatment. What Happened Next Shocked Them"},"content":{"rendered":"<p><br \/>\n<\/p>\n<div data-article-body=\"true\">\n<h3 class=\"mb-4 text-lg font-bold\">NEED TO KNOW<\/h3>\n<ul class=\"mb-4\">\n<li class=\"ml-4 list-disc\">\n<div class=\"\">\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Five-month-old Ginny was diagnosed with a rare genetic disorder called Spinal Muscular Atrophy, which she could die from before her second birthday<\/p>\n<\/div>\n<\/li>\n<li class=\"ml-4 list-disc\">\n<div class=\"\">\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Her parents successfully raised more than $1.8 million in less than 10 days to get her access to an expensive gene therapy program<\/p>\n<\/div>\n<\/li>\n<li class=\"ml-4 list-disc\">\n<div class=\"\">\n<p class=\"mb-4 text-lg md:leading-8 break-words\">&#8220;We\u2019ve been deeply moved by the kindness, generosity, and compassion you\u2019ve shown,&#8221; the parents wrote of the successful fundraising attempt<\/p>\n<\/div>\n<\/li>\n<\/ul>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">A couple is speaking out after a successful fundraising campaign gave them a chance to save their daughter from a potentially deadly illness.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Singapore-born Ginny, 5 months, is just like so many other babies. Her parents describe her as being &#8220;bright and curious.&#8221;<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">&#8220;She smiles when she sees familiar faces and recognizes the voices of the people who love her. She watches the world with bright curiosity,&#8221; they wrote on <a href=\"https:\/\/rayofhope.sg\/campaign\/hopeforbabyginny\/\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:Ray of Hope;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;Ray of Hope&quot;}\" class=\"link \">Ray of Hope<\/a>, a group fundraising system, where the couple turned for help after Ginny was diagnosed with Spinal Muscular Atrophy, a rare illness that could claim her life before her second birthday without proper treatment.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">They continued on the fundraiser, writing, &#8220;Her mind is ready to discover life. But while her mind is growing, her tiny body is slowly losing the ability to move.&#8221;<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">According to the <a href=\"https:\/\/my.clevelandclinic.org\/health\/diseases\/14505-spinal-muscular-atrophy-sma\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:Cleveland Clinic;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;Cleveland Clinic&quot;}\" class=\"link \">Cleveland Clinic<\/a>, Spinal Muscular Atrophy is a &#8220;genetic (inherited) neuromuscular [disorder] that cause certain muscles to become weak and waste away.&#8221;<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Ginny was diagnosed with SMA type 1, which as her doctor Dr Jocelyn Lim told <a href=\"https:\/\/www.straitstimes.com\/singapore\/health\/looking-towards-gene-therapy-to-give-baby-ginny-a-normal-life?ref=most-popular\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:The Straits Times;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;The Straits Times&quot;}\" class=\"link \"><em>The Straits Times<\/em><\/a><em>,<\/em> was the most common type of the disease.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Babies begin to display symptoms within the first six months of their lives. However, the disease is rare, with the outlet reporting that it only affects roughly one in 10,000 people. In Singapore, where Ginny lives with mom Jenny Mak and her dad, there are one or two diagnoses each year.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Mak told the outlet that Ginny first started showing symptoms when she was roughly 3 months old. A caretaker at her daycare noticed that the baby wasn&#8217;t able to hold up her head during tummy time, a milestone that children at that age typically display.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">However, doctors assured the family that it might have been &#8220;a normal occurrence.&#8221; They were told to monitor her in case it was a sign of something more serious.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">\u201cShe was alert and responsive like any baby her age. But her body wasn\u2019t moving the same way. Her legs barely moved,\u201d Mak recalled.<\/p>\n<figure class=\"relative mb-4\">\n<div class=\"relative\"><img alt=\"Baby Ginny, 5 months, was born with a rare disorder that if left untreated could keep her from reaching age 2.Credit: Ray of Hope\" loading=\"lazy\" width=\"731\" height=\"960\" decoding=\"async\" data-nimg=\"1\" class=\"rounded-lg\" style=\"color:transparent\" src=\"https:\/\/s.yimg.com\/ny\/api\/res\/1.2\/LSUqqvYId9NF_8AB6OjkxQ--\/YXBwaWQ9aGlnaGxhbmRlcjt3PTk2MDtoPTEyNjE7Y2Y9d2VicA--\/https:\/\/media.zenfs.com\/en\/people_218\/21d20bbf2de14ee1eab83db907a55457\"\/><button aria-label=\"View larger image\" class=\"group absolute bottom-0 size-full\" data-ylk=\"elm:expand;itc:1;sec:image-lightbox;slk:lightbox-open;\"><span class=\"absolute bottom-3 right-3 rounded-full bg-white p-3 opacity-100 shadow-elevation-3 transition-opacity duration-300 group-hover:block group-hover:opacity-100 md:p-[17px] lg:bottom-6 lg:right-6 lg:bg-white\/90 lg:p-5 lg:opacity-0 lg:shadow-none\"><svg viewbox=\"0 0 22 22\" aria-hidden=\"true\" class=\"size-4 lg:size-6\" width=\"22\" height=\"22\"><path d=\"M12.372.92c0-.506.41-.916.915-.916L21 0l-.004 7.712a.917.917 0 0 1-1.832 0V3.183l-6.827 6.828-1.349-1.348 6.828-6.828h-4.529a.915.915 0 0 1-.915-.915M1.835 17.816l6.828-6.828 1.349 1.349-6.829 6.827h4.529a.915.915 0 0 1 0 1.831L0 21l.004-7.713a.916.916 0 0 1 1.831 0z\"\/><\/svg><\/span><\/button><dialog aria-label=\"Modal dialogue\" aria-modal=\"true\" class=\"fixed bottom-0 left-0 right-0 top-0 z-4 size-full max-h-none max-w-none bg-white hidden\"\/><\/div><figcaption class=\"relative text-sm mt-1 pr-2.5\">\n<p><i>Baby Ginny, 5 months, was born with a rare disorder that if left untreated could keep her from reaching age 2.<br \/>Credit: Ray of Hope<\/i><\/p>\n<\/figcaption><\/figure>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Things took a turn for the worse in January 2026 when Ginny wound up hospitalized after being diagnosed with pneumonia.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">After she displayed continued trouble breathing, the family turned to KK Women\u2019s and Children\u2019s Hospital, where they met Lim and received the diagnosis in late February.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">\u201cType 1 SMA patients like Ginny will have low muscle tone, poor neck control and poor leg movements. They also have difficulties swallowing and feeding, and often have poor weight gain. They can have frequent respiratory infections that take longer to recover from,\u201d Lim explained to the outlet.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Describing the illness and how it progresses, she added, \u201cAs motor neurons are irreversibly lost, patients get progressively weaker, resulting in respiratory damage, feeding difficulties and failure to thrive. They will require long-term respiratory and feeding support, without which most Type 1 patients do not survive past two years and may succumb, most commonly to respiratory infections.&#8221;<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">There are some treatment options that can make Ginny&#8217;s chance of surviving easier. One is a gene therapy program called Zolgensma. Another is a form of oral medication called Risdiplam. There are subsides for the former, but the latter is not covered in Singapore and costs more than $1.8 million.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">That&#8217;s why Mak and her partner took to Ray of Hope on March 12, attempting to raise the money that they needed to get their daughter on the program. On Saturday, March 21, they succeeded.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\"><strong>Want to keep up with the latest crime coverage? Sign up for <\/strong><a href=\"https:\/\/people.com\/people-true-crime-newsletter-sign-up-8692775\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:PEOPLE&#039;s free True Crime newsletter;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;PEOPLE&#039;&quot;}\" class=\"link \"><strong>PEOPLE&#8217;s free True Crime newsletter<\/strong><\/a><strong> for breaking crime news, ongoing trial coverage and details of intriguing unsolved cases.\u00a0<\/strong><\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">They addressed the happy news in an update on the fundraising page, writing, &#8220;When we first began this journey, we didn\u2019t know what to expect. Many of you went above and beyond\u2014sharing Ginny\u2019s story, reaching out to your communities, and standing alongside us in hope. We\u2019ve been deeply moved by the kindness, generosity, and compassion you\u2019ve shown. Every donation, every message, and every share has made a real difference. You\u2019ve helped bring Ginny one step closer to receiving the timely treatment she needs, and that means more to us than we can ever fully express.&#8221;<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">&#8220;We\u2019ve begun coordinating the next steps with the hospital, and if all goes smoothly, Ginny will be able to start her therapy in the coming weeks. Our next focus is to keep Baby Ginny in the best health ahead of the therapy,&#8221; they added.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">&#8220;Thank you to every kind soul in this world,&#8221; they also wrote on <a href=\"https:\/\/www.instagram.com\/p\/DWJi-xVgXVm\/?img_index=1\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:Instagram;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;Instagram&quot;}\" class=\"link \">Instagram<\/a>, where the family is tracking Ginny&#8217;s treatment plans.<\/p>\n<p class=\"mb-4 text-lg md:leading-8 break-words\">Read the original article on <a href=\"https:\/\/people.com\/baby-rare-disorder-expensive-treatment-viral-11932331\" rel=\"nofollow noopener\" target=\"_blank\" data-ylk=\"slk:People;elm:context_link;itc:0;sec:content-canvas\" data-yga=\"{&quot;yLinkElement&quot;:&quot;context_link&quot;,&quot;yModuleName&quot;:&quot;content-canvas&quot;,&quot;yLinkText&quot;:&quot;People&quot;}\" class=\"link \">People<\/a><\/p>\n<\/div>\n<p><script async src=\"\/\/www.instagram.com\/embed.js\"><\/script><br \/>\n<br \/><br \/>\n<br \/><a href=\"https:\/\/sg.style.yahoo.com\/baby-diagnosed-rare-disorder-requiring-173159561.html\" target=\"_blank\" rel=\"noopener\">Read Full Article At Source <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>NEED TO KNOW Five-month-old Ginny was diagnosed with a rare genetic disorder called Spinal Muscular Atrophy, which she could die from before her second birthday&#8230;<\/p>\n","protected":false},"author":1,"featured_media":38997,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"fifu_image_url":"","fifu_image_alt":"","footnotes":""},"categories":[2611],"tags":[],"class_list":["post-38996","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-buzz-headlines","wpcat-2611-id"],"_links":{"self":[{"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/posts\/38996","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=38996"}],"version-history":[{"count":0,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/posts\/38996\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=\/wp\/v2\/media\/38997"}],"wp:attachment":[{"href":"https:\/\/sgbuzz.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=38996"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=38996"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/sgbuzz.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=38996"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}