{"id":3807,"date":"2022-08-01T09:24:30","date_gmt":"2022-08-01T08:24:30","guid":{"rendered":"https:\/\/www.familyfund.org.uk\/?p=3807"},"modified":"2024-02-22T10:31:29","modified_gmt":"2024-02-22T10:31:29","slug":"cleos-story","status":"publish","type":"post","link":"https:\/\/www.familyfund.org.uk\/news\/cleos-story\/","title":{"rendered":"Hot tub helping to reduce Cleo&#8217;s pain"},"content":{"rendered":"<html><body><p>Cleo is six years old and lives in Oldam with her mum Jennifer, dad Jamie, and her brother and sister. Cleo has been diagnosed with a rare genetic disorder called Weidemann-Steiner syndrome.<\/p>\n\n\n\n<p>&ldquo;It&rsquo;s a rare genetic disorder which causes hypermobility, hypotonia, and global developmental delay.<\/p>\n\n\n\n<p>&ldquo;Cleo didn&rsquo;t develop the same as other babies. Her weight fluctuated and she didn&rsquo;t start walking until two years old. Her diagnosis took a long time to accept, it was quite upsetting and it still is sometimes.&rdquo;<\/p>\n\n\n\n<figure class=\"wp-block-image aligncenter size-full is-resized\"><img loading=\"lazy\" decoding=\"async\" width=\"720\" height=\"960\" src=\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2023\/03\/Cleo1.jpg\" alt=\"Young girl wearing glasses sits next to her sister and holds a badge with her name on up to the camera.\" class=\"wp-image-4035\" style=\"width:360px;height:480px\" srcset=\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2023\/03\/Cleo1.jpg 720w, https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2023\/03\/Cleo1-225x300.jpg 225w\" sizes=\"auto, (max-width: 720px) 100vw, 720px\" \/><\/figure>\n\n\n\n<p>Cleo&rsquo;s family describe her as &ldquo;the most loving child that you&rsquo;ll ever meet. However, she holds onto her emotions too much and she struggles to grasp people outside of our family unit.&rdquo;<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"support-from-family-fund\">Support from Family Fund<\/h2>\n\n\n\n<p>Family Fund have provided a range of grants for Cleo and her family for several years.<\/p>\n\n\n\n<p>&ldquo;With a grant from Family Fund, we went to the Weidemann-Steiner syndrome conference, which was awesome as we got to meet a lot of other families in similar situations to us. We made some really nice friends and the conference was super helpful.&rdquo;<\/p>\n\n\n\n<p>In 2021, &ldquo;we were granted a hot tub which helps with Cleo&rsquo;s hypermobility. We were recommended hydrotherapy but the travel and expense was not cost effective. The hot tub helps with Cleo&rsquo;s pain relief since the water relaxes her.<\/p>\n\n\n\n<p>&ldquo;It&rsquo;s helped her massively with her hypermobility. But our gas and electric bill has gone up. We&rsquo;ve not been able to put the hot tub on as much which has had a knock on effect with Cleo as it was such great source of pain relief for her hypermobility. Cleo cries with pain every night and we&rsquo;ve not been able to use it.&rdquo;<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>&ldquo;She&rsquo;s really struggling with her pain at the moment, but we&rsquo;re scared to put the hot tub on.&rdquo;<\/p>\n<\/blockquote>\n\n\n\n<h3 class=\"wp-block-heading\">How are the rising costs affecting you and your family?<\/h3>\n\n\n\n<p>Our research shows that our families have seen a huge increase in living costs while caring for their child and are having a make big cutbacks.<\/p>\n\n\n\n<p><a href=\"https:\/\/www.familyfund.org.uk\/Handlers\/Download.ashx?IDMF=79fc6f59-abc5-450f-b95a-d6d674003f41\" target=\"_blank\" rel=\"noreferrer noopener\">Read our Cost of Caring report<\/a>&nbsp;to see the biggest impacts the crisis is having on families raising disabled or seriously ill children or young people.<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"<p>Jennifer tells us about raising her daughter Cleo, and how rising costs of living are impacting their family.<\/p>\n","protected":false},"author":10,"featured_media":4019,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_oasis_is_in_workflow":0,"_oasis_original":0,"_oasis_task_priority":"","_mixd_wp_review_post_reminders":[],"_mixd_wp_review_date":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[7],"class_list":["post-3807","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family-stories"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.6 - 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