{"id":56278,"date":"2025-06-07T12:38:29","date_gmt":"2025-06-07T12:38:29","guid":{"rendered":"https:\/\/kede.com.br\/news\/mum-of-boy-with-ppfibp1-gene-says-finding-others-gave-her-strength\/"},"modified":"2025-06-07T12:38:31","modified_gmt":"2025-06-07T12:38:31","slug":"mum-of-boy-with-ppfibp1-gene-says-finding-others-gave-her-strength","status":"publish","type":"post","link":"https:\/\/kede.com.br\/news\/mum-of-boy-with-ppfibp1-gene-says-finding-others-gave-her-strength\/","title":{"rendered":"Mum of boy with PPFIBP1 gene says finding others gave her &#8216;strength&#8217;"},"content":{"rendered":"<p> <br \/>\n<\/p>\n<div>\n<p class=\"sc-9a00e533-0 hxuGS\">When Amanda and Nick learnt their son had a life-limiting condition, they had no-one in the same situation to turn to. <\/p>\n<p class=\"sc-9a00e533-0 hxuGS\">Jack is only 11 months old but is one of only 16 children in the world with a genetic condition that is so rare it doesn&#8217;t have a name. <\/p>\n<p class=\"sc-9a00e533-0 hxuGS\">&#8220;We are going to outlive our child, and knowing that his brothers and his sister may one day have to say goodbye to him&#8230; I can&#8217;t even begin to explain how difficult that is to process each day,&#8221; said Amanda. <\/p>\n<p class=\"sc-9a00e533-0 hxuGS\">But the mum said finding a woman in Georgia, USA, whose daughter had the same condition as Jack had been an source of &#8220;strength&#8221; for them, but added it was &#8220;very bittersweet&#8221; because unfortunately her daughter did pass away.<\/p>\n<\/div>\n<p><br \/>\n<br \/><a href=\"https:\/\/www.bbc.com\/news\/videos\/c8d12qd02vmo\">Source link <\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>When Amanda and Nick learnt their son had a life-limiting condition, they had no-one in the same situation to turn to. Jack is only 11 months old but is one of only 16 children in the world with a genetic condition that is so rare it doesn&#8217;t have a name. &#8220;We are going to outlive [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":56279,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[64],"tags":[2434,2256,1417,4201,76,17433,884],"_links":{"self":[{"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/posts\/56278"}],"collection":[{"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/comments?post=56278"}],"version-history":[{"count":1,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/posts\/56278\/revisions"}],"predecessor-version":[{"id":56280,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/posts\/56278\/revisions\/56280"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/media\/56279"}],"wp:attachment":[{"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/media?parent=56278"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/categories?post=56278"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/kede.com.br\/news\/wp-json\/wp\/v2\/tags?post=56278"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}