{"id":3141,"date":"2021-04-17T10:20:34","date_gmt":"2021-04-17T10:20:34","guid":{"rendered":"https:\/\/www.withinnigeria.com\/gist\/?p=3141"},"modified":"2021-04-17T10:20:34","modified_gmt":"2021-04-17T10:20:34","slug":"save-little-ayah-14-months-old-and-needs-a-drug-that-costs-2-1-million-to-save-her-life","status":"publish","type":"post","link":"https:\/\/www.withinnigeria.com\/gist\/2021\/04\/17\/save-little-ayah-14-months-old-and-needs-a-drug-that-costs-2-1-million-to-save-her-life\/","title":{"rendered":"Save little Ayah: 14 months old and needs a drug that costs $2.1 million to save her life"},"content":{"rendered":"<p>14 months old, Ayah (born on January 15, 2020), a bubbly beautiful princess who likes to smile a lot but has a rare genetic and degenerative disorder called SMA (Spinal Muscular Atrophy) type 2.<\/p>\n<p>SMA\u00a0is a rare genetic disease that affects the central nervous system, voluntary skeletal muscle movement, and the peripheral nervous system (the connection between the central nervous system and the rest of the body). As a result,\u00a0SMA\u00a0affects basic motor functions such as walking, hand movements and\u00a0 feeding. After\u00a0 progression, the patients lose the ability to swallow, breathe and eventually die.<\/p>\n<p><img decoding=\"async\" class=\"aligncenter size-full wp-image-3144\" src=\"https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f.jpg\" alt=\"\" width=\"1079\" height=\"1549\" srcset=\"https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f.jpg 1079w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f-209x300.jpg 209w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f-713x1024.jpg 713w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f-768x1103.jpg 768w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe21b494f-1070x1536.jpg 1070w\" sizes=\"(max-width: 1079px) 100vw, 1079px\" \/><\/p>\n<p>Since the diagnosis,\u00a0Ayah\u00a0has been put on Spinraza, a prescription drug administered as a spinal injection throughout a patient\u2019s life. Spinraza increases the ability of the\u00a0SMN2 gene\u00a0(which is a back up of the\u00a0SMN1 gene-the one that\u00a0Ayah\u00a0is missing) to produce\u00a0SMN\u00a0protein which in turn improves motor functions and survival.<\/p>\n<p>Zolgensma\u00a0is a\u00a0new\u00a0one time\u00a0gene therapy treatment for kids under the age of 2. It\u00a0REPLACES\u00a0the missing\u00a0SMN1 gene\u00a0with a new, working copy that helps motor neuron cells work properly and survive but it\u2019s currently the most expensive drug in the world at $2.1 million. It is NOT a cure since it does not reverse damage already caused by SMA before treatment. However, with <a href=\"https:\/\/www.withinnigeria.com\/gist\/2021\/04\/03\/single-fathers-tweet-trends-on-twitter-over-girlfriends-sacrifices\/\">supportive<\/a> therapy, it has by far shown the best results. It is recommended that the earlier the patient receives the treatment, the better.<\/p>\n<p>We would like to invite you to help Ayah&#8217;s family, friends and network create awareness around this fundraising by sending us your prayers, positive thoughts, contribute financially and\/or share this invitation with more networks so that we may reach as many <a href=\"https:\/\/www.withinnigeria.com\/gist\/2021\/02\/11\/europe-based-nigerian-businessman-seeks-a-life-partner-who-can-cook\/\">helpful<\/a> souls as possible. Every single contribution means the world to us.<\/p>\n<p><img decoding=\"async\" class=\"aligncenter size-full wp-image-3143\" src=\"https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9.jpg\" alt=\"\" width=\"1078\" height=\"1081\" srcset=\"https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9.jpg 1078w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9-300x300.jpg 300w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9-1021x1024.jpg 1021w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9-150x150.jpg 150w, https:\/\/www.withinnigeria.com\/gist\/wp-content\/uploads\/sites\/7\/2021\/04\/chioma_adebiyi\/2021\/04\/17\/6079fe8676bc9-768x770.jpg 768w\" sizes=\"(max-width: 1078px) 100vw, 1078px\" \/><\/p>\n<p>We hope to get Ayah treated as soon as we raise all the funds needed.\u00a0 $2.1 million will be used to buy the drug zolgensma. The remaining $300,000 and any additional donations will be used for treatment at Boston Children&#8217;s Hospital, travel and accommodation during our stay in the USA. Thank you so much for your kind donations!!<\/p>\n<p>Please follow Ayah\u00b4s journey on :<\/p>\n<p>facebook: Little Ayah<br \/>\nInstagram: @little.ayah<\/p>\n<p>GOFUNDME FOR LITTLE AYAH<\/p>\n<p>LITTLE AYAH&#8217;S STORY BY CNN INTERNATIONAL<\/p>\n<p>LITTLE AYAH ON INSTAGRAM<\/p>\n<p>LITTLE AYAH ON TWITTER<\/p>\n<p>LITTLE AYAH ON FACEBOOK<\/p>\n","protected":false},"excerpt":{"rendered":"<p>14 months old, Ayah (born on January 15, 2020), a bubbly beautiful princess who likes to smile a lot but has a rare genetic and degenerative disorder called SMA (Spinal Muscular Atrophy) type 2. SMA\u00a0is a rare genetic disease that affects the central nervous system, voluntary skeletal muscle movement, and the peripheral nervous system (the [&hellip;]<\/p>\n","protected":false},"author":5,"featured_media":3142,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"jnews-multi-image_gallery":[],"jnews_single_post":[],"jnews_primary_category":[],"footnotes":""},"categories":[5],"tags":[1173,1172,1175,1176,1174,1171],"class_list":["post-3141","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-world","tag-14-months-old","tag-ayah","tag-drug","tag-life","tag-needs","tag-save"],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.8 (Yoast SEO v27.8) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Save little Ayah: 14 months old and needs a drug that costs $2.1 million to save her life<\/title>\n<meta name=\"robots\" content=\"index, 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