{"id":59891,"date":"2025-12-13T17:39:59","date_gmt":"2025-12-13T22:39:59","guid":{"rendered":"https:\/\/lakelandgazette.info\/news\/?p=59891"},"modified":"2025-12-13T17:40:04","modified_gmt":"2025-12-13T22:40:04","slug":"mother-of-lakeland-toddler-with-rare-genetic-disorder-hopes-intensive-therapy-could-help-her-son","status":"publish","type":"post","link":"https:\/\/lakelandgazette.info\/news\/2025\/12\/13\/mother-of-lakeland-toddler-with-rare-genetic-disorder-hopes-intensive-therapy-could-help-her-son\/","title":{"rendered":"Mother of Lakeland toddler with rare genetic disorder hopes intensive therapy could help her son"},"content":{"rendered":"\n

This holiday season, a Lakeland family wishes to go to North Carolina.<\/p>\n\n\n\n

It is not for a vacation, but instead an intensive, specialized therapy for a toddler with an \u201cultra rare\u201d genetic disorder.<\/p>\n\n\n\n

\u00a0\u201cIf we could help him make those connections from his brain to his muscles, then he\u2019ll continue to progress forward,\u201d said Kayla Newmyer of Lakeland.<\/p>\n\n\n

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\"\"<\/figure>\n<\/div>\n\n\n

Newmyer\u2019s 2-year-old son, Keegan, is a toddler with a sense of humor.<\/p>\n\n\n\n

Kayla Newmyer describes Keegan\u2019s condition as living in a \u201cglass bubble.\u201d<\/p>\n\n\n\n

Keegan soaks in the world around him, but his body does not allow him to access it.<\/p>\n\n\n\n

At 11 months old, Keegan Newmyer was diagnosed with\u00a0Snyder-Robinson syndrome<\/a>, an ultra-rare genetic disorder with few cases worldwide.<\/p>\n\n\n\n

\u201cHe might be the only boy that you ever meet with this condition,\u201d Newmyer said. \u201cWith it comes low muscle tone, seizures, kidney issues, a bunch of other things that are pretty common with other genetic disorders.\u201d<\/p>\n\n\n\n

Keegan also has Lennox-Gastaut syndrome, a severe form of epilepsy.<\/p>\n\n\n\n

\u201cUnfortunately, there are times that [children with Lennox-Gastaut syndrome] don\u2019t wake up from their sleep. The seizures stop their brain. We are always thankful for every morning that he wakes up,\u201d said Newmyer.<\/p>\n\n\n\n

Through her research, Newmyer found a facility in North Carolina called \u201cAll Kids Are Perfect,\u201d <\/a>which provides intense, weeks-long therapy aimed at improving his skills and better linking Keegan\u2019s brain to his muscles.<\/p>\n\n\n\n

\u201cTraditional PT does work, but it takes a long time, and these intensives kind of speed up the process,\u201d said Newmyer.<\/p>\n\n\n\n

The program, plus the cost of a visiting therapist when they get home in Lakeland, would cost $14,000, which the Newmyers are trying to raise.<\/p>\n\n\n\n

\u201cIf it means that he can gain some independence then the uncomfortable ask of your community to say \u2018Hey, could you share this? Get the word out.\u2019 It\u2019s worth it in the long run,\u201d Newmyer said.<\/p>\n\n\n\n

To learn more about Keegan\u2019s journey and how to help, visit https:\/\/www.supportnow.org\/keegans-journey-forward?fbclid=IwY2xjawOmh0dleHRuA2FlbQIxMABicmlkETF0WWwzUjdqQlA0SlNIMmZ0c3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHg1CNOwep0kji2W6EP14VaJt119r9h2Y9dox6-PX9eKggosYsICBJgX7pHQD_aem_n912CqpSoUU72XN21R0MHA<\/a>.<\/p>\n","protected":false},"excerpt":{"rendered":"

This holiday season, a Lakeland family wishes to go to North Carolina. It is not for a vacation, but instead an intensive, specialized therapy for a toddler with an \u201cultra… <\/p>\n","protected":false},"author":1,"featured_media":59892,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"12","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","inline_featured_image":false,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"wpai_generated_summary":"","footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":true,"token":"eyJpbWciOiJodHRwczpcL1wvaTAud3AuY29tXC9sYWtlbGFuZGdhemV0dGUuaW5mb1wvbmV3c1wvd3AtY29udGVudFwvdXBsb2Fkc1wvMjAyNVwvMTJcL3NtaWxlLndlYnA_Zml0PTc2OCUyQzQzMiZzc2w9MSIsInR4dCI6Ik1vdGhlciBvZiBMYWtlbGFuZCB0b2RkbGVyIHdpdGggcmFyZSBnZW5ldGljIGRpc29yZGVyIGhvcGVzIGludGVuc2l2ZSB0aGVyYXB5IGNvdWxkIGhlbHAgaGVyIHNvbiIsInRlbXBsYXRlIjoiaGlnaHdheSIsImZvbnQiOiIiLCJibG9nX2lkIjoxNjMwNDA2NjF9.mgbwQ2_c2p9g5NiHerZhQlh2-dzgOb1UgdgNCyd9mlYMQ"},"version":2,"attached_media":[{"id":59892,"url":"http:\/\/lakelandgazette.info\/news\/wp-content\/uploads\/2025\/12\/smile.webp","type":"image\/webp"}]},"_wpas_customize_per_network":false},"categories":[12,14],"tags":[12845],"class_list":["post-59891","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-local","category-news","tag-mother-of-lakeland-toddler-with-rare-genetic-disorder-hopes-intensive-therapy-could-help-her-son"],"jetpack_publicize_connections":[],"_links":{"self":[{"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/posts\/59891","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/comments?post=59891"}],"version-history":[{"count":1,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/posts\/59891\/revisions"}],"predecessor-version":[{"id":59893,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/posts\/59891\/revisions\/59893"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/media\/59892"}],"wp:attachment":[{"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/media?parent=59891"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/categories?post=59891"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/lakelandgazette.info\/news\/wp-json\/wp\/v2\/tags?post=59891"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}