{"id":16112,"date":"2026-06-03T05:58:27","date_gmt":"2026-06-03T00:28:27","guid":{"rendered":"https:\/\/banitoday.com\/3-year-old-with-rare-genetic-disorder-moves-hc-seeking-help-for-treatment-delhi-news\/"},"modified":"2026-06-03T05:58:27","modified_gmt":"2026-06-03T00:28:27","slug":"3-year-old-with-rare-genetic-disorder-moves-hc-seeking-help-for-treatment-delhi-news","status":"publish","type":"post","link":"https:\/\/banitoday.com\/hi\/3-year-old-with-rare-genetic-disorder-moves-hc-seeking-help-for-treatment-delhi-news\/","title":{"rendered":"3-year-old with rare genetic disorder moves HC seeking help for treatment | Delhi News"},"content":{"rendered":"<p> <br \/>\n<\/p>\n<div data-articlebody=\"1\"><video-embed value=\"false\"\/><\/p>\n<div class=\"ihgno clearfix  \">\n<div class=\"e9jwa\">\n<div class=\"vdo_embedd\">\n<div class=\"GfdvZ\">\n<section class=\"_bIDB  clearfix id-r-component leadmedia undefined undefined  E9tg9 \" style=\"top:0px\">\n<div class=\"_bIDB\" data-ua-type=\"1\" onclick=\"stpPgtnAndPrvntDefault(event)\">\n<div class=\"ypVvZ\">\n<div class=\"WGttI\"><img src=\"https:\/\/static.toiimg.com\/thumb\/msid-131469776,imgsize-20962,width-400,height-225,resizemode-72\/img_high_court_2_1_e8k9ct0hjpg.jpg\" alt=\"3-year-old with rare genetic disorder moves HC seeking help for treatment\" title=\"File photo for representation\" decoding=\"async\" fetchpriority=\"high\"\/><\/div>\n<\/div>\n<\/div>\n<div class=\"Ta7d_ img_cptn\"><span title=\"File photo for representation\">File photo for representation<\/span><\/div>\n<\/section>\n<\/div><\/div>\n<\/div>\n<p><span class=\"strong\" data-ua-type=\"1\" onclick=\"stpPgtnAndPrvntDefault(event)\">New Delhi:<\/span> A three-year-old Delhi girl suffering from a rare genetic disorder has approached the <a href=\"https:\/\/timesofindia.indiatimes.com\/topic\/delhi-high-court\" styleobj=\"[object Object]\" class=\"\" commonstate=\"[object Object]\" frmappuse=\"1\">Delhi High Court<\/a> seeking urgent financial assistance for a life-saving bone marrow transplant, saying the treatment costs up to Rs 40 lakh and is not available at govt hospitals.<span class=\"id-r-component br\" data-pos=\"5\"\/>The petition, filed on behalf of Baby Sanskriti Bhagat, also known as Saanchi, states that she suffers from LRBA deficiency, a rare inherited disorder that affects the immune system and can lead to severe immunodeficiency and autoimmune complications.<span class=\"id-r-component br\" data-pos=\"7\"\/>According to the plea, the child began suffering from recurrent fever and severe anaemia during infancy and required eight blood transfusions within eight months. <!-- -->Doctors initially suspected multiple conditions before a whole-genome test conducted in July last year identified the underlying genetic disorder.<span class=\"id-r-component br\" data-pos=\"12\"\/>The petition says specialists at Apollo Hospital, Chennai, concluded that a bone marrow transplant is the only curative treatment available and estimated the cost at Rs 40 lakh. A similar estimate obtained from Apollo Hospital, Delhi, placed the cost at approximately Rs 36 lakh.<span class=\"id-r-component br\" data-pos=\"15\"\/>In a significant submission, the plea claims that AIIMS Delhi informed the family in April this year that it did not have the facilities required to provide the specialised treatment needed for the child&#8217;s condition.<span class=\"id-r-component br\" data-pos=\"17\"\/>The child&#8217;s father told the court that he has exhausted his savings on diagnosis and treatment and is unable to bear the cost of the transplant. The family has sought financial assistance under the National Policy for Rare Diseases, which provides support of up to Rs 50 lakh for eligible patients.<span class=\"id-r-component br\" data-pos=\"20\"\/>Appearing for the petitioner, advocate Ashok Agarwal argued that the primary objective of the National Policy for Rare Diseases is to save the life of a child suffering from a rare disease and that it should not matter whether treatment is provided at a govt or private hospital. He contended that denying financial assistance solely because the treatment is being undertaken at a private facility would defeat the purpose of the policy.<span class=\"id-r-component br\" data-pos=\"22\"\/>The petition seeks directions to the Union govt to release funds for the transplant and ensure that treatment begins without delay, arguing that any postponement could lead to irreversible deterioration in the child&#8217;s health.<\/div>\n<\/div>\n<p><br \/>\n<br \/><a href=\"https:\/\/timesofindia.indiatimes.com\/city\/delhi\/3-year-old-with-rare-genetic-disorder-moves-hc-seeking-help-for-treatment\/articleshow\/131469777.cms\">Source link <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>File photo for representation New Delhi: A three-year-old Delhi girl suffering from a rare genetic disorder has approached the Delhi High Court seeking urgent financial assistance for a life-saving bone marrow transplant, saying the treatment costs up to Rs 40 lakh and is not available at govt hospitals.The petition, filed on behalf of Baby Sanskriti [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":16113,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[150],"tags":[],"class_list":["post-16112","post","type-post","status-publish","format-standard","has-post-thumbnail","category-delhi"],"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/posts\/16112","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/comments?post=16112"}],"version-history":[{"count":0,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/posts\/16112\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/media\/16113"}],"wp:attachment":[{"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/media?parent=16112"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/categories?post=16112"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/banitoday.com\/hi\/wp-json\/wp\/v2\/tags?post=16112"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}