{"id":57412,"date":"2025-08-04T10:10:09","date_gmt":"2025-08-04T10:10:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/57412\/"},"modified":"2025-08-04T10:10:09","modified_gmt":"2025-08-04T10:10:09","slug":"my-son-has-a-rare-condition-only-15-people-have","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/57412\/","title":{"rendered":"&#8216;My son has a rare condition only 15 people have&#8217;"},"content":{"rendered":"<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;It&#8217;s a struggle in day-to-day life, because there&#8217;s not a lot of information about the condition, there isn&#8217;t a lot of research we can look at,&#8221; Kelham said.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;We both constantly worry every day because with FNLC there&#8217;s always a chance of cardiac arrest.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;We don&#8217;t want that to happen, so we take every day as it comes, and put a smile on Harrison&#8217;s face and we do the best we can as parents. <\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;But Harrison doesn&#8217;t stop doing what he does, and we keep going.&#8221;<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">Due to his condition, Kelham and Shannon, 31, have to take Harrison to Great Ormond Street Hospital in London for treatment. Something the family struggle with. <\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;His current car seat isn&#8217;t right for him, he gets agitated trying to get comfortable, and we have to keep stopping every 30 to 45 minutes,&#8221; Kelham added.<\/p>\n<p class=\"ssrcss-1q0x1qg-Paragraph e1jhz7w10\">&#8220;Car journeys are a problem in general, and he works himself up and can be sick because of it.&#8221;<\/p>\n","protected":false},"excerpt":{"rendered":"&#8220;It&#8217;s a struggle in day-to-day life, because there&#8217;s not a lot of information about the condition, there isn&#8217;t&hellip;\n","protected":false},"author":2,"featured_media":57413,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[50],"tags":[200,79],"class_list":["post-57412","post","type-post","status-publish","format-standard","has-post-thumbnail","category-genetics","tag-genetics","tag-science"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/57412","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=57412"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/57412\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/57413"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=57412"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=57412"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=57412"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}