{"id":10805,"date":"2025-02-04T13:51:57","date_gmt":"2025-02-04T13:51:57","guid":{"rendered":"https:\/\/www.familyfund.org.uk\/?p=10805"},"modified":"2025-02-04T13:52:33","modified_gmt":"2025-02-04T13:52:33","slug":"rare-condition-no-support-networks","status":"publish","type":"post","link":"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/","title":{"rendered":"“Her condition is so rare that there\u2019s not many support networks”"},"content":{"rendered":"

Meet Ophelia<\/h2>\n\n\n\n

Thirteen-year-old Ophelia lives in Scotland with her mum Siobhan and younger sister Lillith, who is classed as a young carer. Ophelia has a series of diagnoses including an extremely rare brain condition called Bilateral Perisylvian Polymicrogyria.<\/p>\n\n\n\n

Siobhan explains, “Ophelia was born premature. Around the time of her first birthday, we noticed that she wasn’t hitting her milestones. When Ophelia was five, she was then diagnosed with an extremely rare brain condition called Bilateral Perisylvian Polymicrogyria. It basically means that she was born with an abnormal brain, some parts of her cerebral cortex are smooth when they’re usually meant to consist of deep folds and grooves.<\/p>\n\n\n\n

“Ophelia has a number of other conditions including a chromosome deficiency. The 26th<\/sup> part of Ophelia’s sixth chromosome is missing which causes her to choke a lot when eating. Although she is thirteen now, mentally she’s similar to a five-year-old. She finds it hard to communicate her emotions and to understand things but we’re using pictures and other aids which are helping her to improve. We try to make home a safe space for Ophelia so that she can express herself.<\/p>\n\n\n\n

\"Ophelia,<\/figure>\n\n\n\n

Day to day life<\/h3>\n\n\n\n

“Ophelia attends a specialist unit within a mainstream school for her education. She really enjoys science, cooking, art, and outdoor learning. She’s such a caring child who will do her best to cheer you up if you’re feeling down. She will even go and help a stranger if she sees them upset.<\/p>\n\n\n\n

\n

“The older that Ophelia gets, the more she notices that she’s different and it can be frustrating as she doesn’t like being treated differently. As a family we don’t treat Ophelia any different as we don’t like to define her by the disabilities.”<\/p>\n<\/blockquote>\n\n\n\n

“Ophelia’s younger sister Lillith is such a vibrant little girl. She struggles sometimes with the fact that her older sister is disabled but Lillith is mature for her age and helps Ophelia when she can. It can be difficult for our family because if Ophelia is having a bad day, then we will have to cancel or change our plans.<\/p>\n\n\n\n

“As a full-time parent carer, it’s a struggle to find flexible work that I can work around my caring responsibilities.”<\/p>\n\n\n\n

\n

“I wouldn’t change Ophelia for the world. She’s an amazing little girl. It’s just frustrating that her condition is so rare that there’s not many support networks. It can be quite isolating at times.”<\/p>\n<\/blockquote>\n\n\n\n

How Family Fund helped<\/h4>\n\n\n\n

Family Fund has supported Ophelia by granting a trampoline. Siobhan says, “The trampoline we received is amazing! It allows Ophelia and Lillith to play together in a safe environment.<\/p>\n\n\n\n

\"Ophelia,<\/figure>\n\n\n\n

“It’s bigger and better quality than our previous trampoline that broke during a storm. Ophelia loves playing on it every day. We don’t have a local park so it’s really nice that she’s able to play outside in the garden.<\/p>\n\n\n\n

“Family Fund is an amazing life changing charity. I put off applying to the charity for years because I was so worried that it would be a long application, like other forms we’re used to filling in, but it was such an easy process. My only regret is that I didn’t apply sooner. It was a wonderful feeling to receive the award letter.”<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

February 29 is Rare Disease Day, raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers. We meet one family supported by Family Fund living with a rare condition. <\/p>\n","protected":false},"author":10,"featured_media":10807,"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":"2normal","_mixd_wp_review_post_reminders":[],"_mixd_wp_review_date":0,"footnotes":"","_links_to":"","_links_to_target":""},"categories":[7],"class_list":["post-10805","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-family-stories"],"acf":[],"yoast_head":"\n"Her condition is so rare that there\u2019s not many support networks" - Family Fund<\/title>\n<meta name=\"description\" content=\"For Rare Disease Day, we meet a family to discuss rare conditions and raise awareness for the 300 million people living with a rare disease.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\""Her condition is so rare that there\u2019s not many support networks" - Family Fund\" \/>\n<meta property=\"og:description\" content=\"For Rare Disease Day, we meet a family to discuss rare conditions and raise awareness for the 300 million people living with a rare disease.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/\" \/>\n<meta property=\"og:site_name\" content=\"Family Fund\" \/>\n<meta property=\"article:published_time\" content=\"2025-02-04T13:51:57+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-02-04T13:52:33+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2024\/01\/Copy-of-Stories-and-event-page-headers-1460px-x-625px.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1460\" \/>\n\t<meta property=\"og:image:height\" content=\"625\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Kate Redway\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Estimated reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/\",\"url\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/\",\"name\":\"\\\"Her condition is so rare that there\u2019s not many support networks\\\" - Family Fund\",\"isPartOf\":{\"@id\":\"https:\/\/familyfundprd.wpengine.com\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2024\/01\/Copy-of-Stories-and-event-page-headers-1460px-x-625px.png\",\"datePublished\":\"2025-02-04T13:51:57+00:00\",\"dateModified\":\"2025-02-04T13:52:33+00:00\",\"author\":{\"@id\":\"https:\/\/familyfundprd.wpengine.com\/#\/schema\/person\/75df94b891209c06ce4335e6315c5dee\"},\"description\":\"For Rare Disease Day, we meet a family to discuss rare conditions and raise awareness for the 300 million people living with a rare disease.\",\"breadcrumb\":{\"@id\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/#breadcrumb\"},\"inLanguage\":\"en-GB\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-GB\",\"@id\":\"https:\/\/www.familyfund.org.uk\/news\/rare-condition-no-support-networks\/#primaryimage\",\"url\":\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2024\/01\/Copy-of-Stories-and-event-page-headers-1460px-x-625px.png\",\"contentUrl\":\"https:\/\/www.familyfund.org.uk\/wp-content\/uploads\/2024\/01\/Copy-of-Stories-and-event-page-headers-1460px-x-625px.png\",\"width\":1460,\"height\":625,\"caption\":\"Two sisters take a selfie, grinning at the camera. 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