{"id":442654,"date":"2026-06-10T16:03:25","date_gmt":"2026-06-10T14:03:25","guid":{"rendered":"https:\/\/www.ma-grande-taille.com\/?p=442654"},"modified":"2026-06-10T16:03:25","modified_gmt":"2026-06-10T14:03:25","slug":"fille-nee-maladie-rarissime-histoire-touche-milliers-internautes","status":"publish","type":"post","link":"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/a-girl-born-with-a-very-rare-disease-a-story-that-touches-thousands-of-internet-users-442654","title":{"rendered":"Her daughter was born with an extremely rare disease, and her story has touched thousands of internet users."},"content":{"rendered":"<p>Discovering that your child will be born with medical differences can raise many questions. Leah Ragan&#39;s story shows that beyond the diagnoses, there are also moments of joy, unexpected progress, and a remarkable capacity for adaptation. By sharing her daily life, this American mother offers a heartfelt testimony that now comforts thousands of families.<\/p>\n<h2> A pregnancy marked by uncertainty<\/h2>\n<p> At 19, Leah Ragan was experiencing her first pregnancy when a 24-week ultrasound revealed a cleft lip in her baby. It was a difficult diagnosis to accept. The young woman had already gone through a period of worry after the discovery of a partial uterine septum, which doctors ultimately deemed to be without major consequences. At this point, Leah thought she was facing the biggest challenge of motherhood, but her daughter&#39;s story would hold many more surprises.<\/p>\n<h2> Extremely rare medical characteristics<\/h2>\n<p> After her birth, several diagnoses clarified the little girl&#39;s condition. In addition to the cleft lip, doctors identified Goldenhar syndrome, a rare congenital disorder that affects the development of certain facial features. The child also has microtia, characterized by incomplete development of the external ear.<\/p>\n<p>It was primarily the presence of microglossia \u2013 an abnormally small tongue \u2013 that caught the attention of specialists. This condition is so exceptional that fewer than fifty cases have been reported in medical literature since the beginning of the 18th century. <\/p>\n<blockquote class=\"tiktok-embed\" style=\"max-width: 605px; min-width: 325px;\" cite=\"https:\/\/www.tiktok.com\/@l.r.r14\/video\/7580016495904722190\" data-video-id=\"7580016495904722190\">\n<section> <a title=\"@l.r.r14\" href=\"https:\/\/www.tiktok.com\/@l.r.r14?refer=embed\" target=\"_blank\" rel=\"noopener\">@lrr14<\/a> I can&#39;t believe it&#39;s been 8 months since April\u2026 <a title=\"babygirl\" href=\"https:\/\/www.tiktok.com\/tag\/babygirl?refer=embed\" target=\"_blank\" rel=\"noopener\">#babygirl<\/a> <a title=\"cletstrong\" href=\"https:\/\/www.tiktok.com\/tag\/cleftstrong?refer=embed\" target=\"_blank\" rel=\"noopener\">#cleftstrong<\/a> <a title=\"fyp\" href=\"https:\/\/www.tiktok.com\/tag\/fyp?refer=embed\" target=\"_blank\" rel=\"noopener\">#fyp<\/a> <a title=\"\u266c original sound - \ud835\udcb6\ud835\udcc2\ud835\udcb6\ud835\udcbe \ud83c\udf00\u2600\ufe0f\" href=\"https:\/\/www.tiktok.com\/music\/original-sound-7536694526191127327?refer=embed\" target=\"_blank\" rel=\"noopener\">\u266c original sound - \ud835\udcb6\ud835\udcc2\ud835\udcb6\ud835\udcbe \ud83c\udf00\u2600\ufe0f<\/a><\/section>\n<\/blockquote>\n<p><script async src=\"https:\/\/www.tiktok.com\/embed.js\"><\/script><\/p>\n<h2> A little girl forging her own path<\/h2>\n<p> Now a year old, the little girl is fed through a feeding tube and uses bone-anchored hearing aids, a device that transmits sound via bone conduction. Despite these daily adjustments, she continues to develop at her own pace and reach numerous milestones. This progress regularly impresses the healthcare professionals who care for her.<\/p>\n<p>For Leah, the perspective on the situation has changed profoundly over time. Fears about the future have gradually given way to another reality: that of a resourceful child whose every achievement deserves to be celebrated.<\/p>\n<h2> When social media becomes a space for support<\/h2>\n<p> By sharing her experience on TikTok, Leah Ragan didn&#39;t expect to reach so many people. Her posts quickly sparked reactions from around the world, particularly from parents facing similar journeys. Through her posts, the young mother emphasizes the importance of embracing all the emotions that accompany a diagnosis. Worry, sadness, and fear can coexist with love, hope, and the discovery of a daily life different from what one had imagined.<\/p>\n<p>However, her choice to share moments of life with her young daughter on social media also raises criticism, with some people concerned about the risks associated with children&#39;s online exposure and the safety of content disseminated on the internet.<\/p>\n<h2> A story that celebrates love in all its forms<\/h2>\n<p> The journey of Leah and her daughter reminds us that no two lives are alike. Behind the medical terms and statistics are unique children, surrounded by loved ones who learn, day after day, to move forward with them.<\/p>\n<p>By authentically sharing her story, this young mother helps break the isolation that some families can feel. A profoundly human account, it highlights the power of mutual support and the beauty of the bonds that are forged, sometimes in the most unexpected places.<\/p>\n","protected":false},"excerpt":{"rendered":"Discovering that your child will be born with medical differences can raise many questions. Leah Ragan&#39;s story shows...","protected":false},"author":8385,"featured_media":442655,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"disable_msn":false,"footnotes":""},"categories":[6139],"tags":[],"class_list":["post-442654","post","type-post","status-publish","format-standard","has-post-thumbnail","category-vie-de-maman"],"image":{"medium":["https:\/\/www.ma-grande-taille.com\/wp-content\/uploads\/2026\/05\/Sa-fille-nee-avec-une-maladie-rarissime-et-son-histoire-touche-des-milliers-dinternautes-200x113.jpg",200,113,true],"large":["https:\/\/www.ma-grande-taille.com\/wp-content\/uploads\/2026\/05\/Sa-fille-nee-avec-une-maladie-rarissime-et-son-histoire-touche-des-milliers-dinternautes-500x281.jpg",500,281,true]},"custom":{"td_video":"","featured_image":"https:\/\/www.ma-grande-taille.com\/wp-content\/uploads\/2026\/05\/Sa-fille-nee-avec-une-maladie-rarissime-et-son-histoire-touche-des-milliers-dinternautes.jpg","author":{"name":"Julia Perez","avatar":"https:\/\/www.ma-grande-taille.com\/wp-content\/uploads\/2026\/10\/cropped-julia_perez-96x96.jpg"},"categories":[{"term_id":6139,"name":"Parenting","slug":"vie-de-maman","term_group":0,"term_taxonomy_id":6311,"taxonomy":"category","description":"<p>The Parenting section of The Body Optimist supports moms, dads and every kind of family through everyday life with kids: raising children, emotions, school, relationships and the mental load. Advice from child development professionals, explainers and personal stories approach parenting without guilt, whatever your family looks like.<\/p>\n<h2>What you\u2019ll find in the Parenting section<\/h2>\n<ul>\n<li><strong>Raising kids<\/strong>: teaching children to share, setting limits without yelling, praising effort over intelligence, with ideas drawn from positive parenting.<\/li>\n<li><strong>School and bullying<\/strong>: helping your child feel good at school, spotting the signs of bullying and knowing how to respond.<\/li>\n<li><strong>Postpartum for both parents<\/strong>: your body after birth, the <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/sleep-deprivation-fatigue-loneliness-the-reality-of-young-mothers-433661\">exhaustion and loneliness of new mothers<\/a>, and postpartum depression in fathers, still too little known.<\/li>\n<li><strong>All kinds of families<\/strong>: single-parent, blended and same-sex parent families, parents with disabilities, with more stories in our <a href=\"https:\/\/www.ma-grande-taille.com\/en\/societe\/lgbtqia\">LGBTQIA+<\/a> section.<\/li>\n<li><strong>Family relationships<\/strong>: your bond with your own parents, toxic families, overbearing grandparents, sibling rivalry.<\/li>\n<li><strong>Life choices<\/strong>: wanting children, or not, discussed without judgment or social pressure.<\/li>\n<\/ul>\n<h2>How do you set limits for your child without yelling?<\/h2>\n<p>Setting boundaries without yelling relies on clarity and consistency more than strictness. Keep instructions short and positive (\u201cwe walk in the hallway\u201d rather than \u201cdon\u2019t run\u201d), get down to your child\u2019s eye level and look at them. Announce transitions ahead of time to head off meltdowns when an activity ends. Name your child\u2019s feeling without giving in on the rule: \u201cYou\u2019re angry because the screen is turning off. I get it, and it\u2019s bath time.\u201d When tension rises, stepping out of the room for a few seconds beats raising your voice. Some parents even <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/giving-orders-to-a-singing-child-an-unusual-trick-to-avoid-shouting-428727\">sing their instructions<\/a> to keep things light. No parent is perfect: apologizing after you lose your temper also teaches your child how to repair a relationship.<\/p>\n<h2>Our take on parenting<\/h2>\n<p>Parenting doesn\u2019t rest on mothers alone: we also talk about dads, co-parents, blended, single-parent and LGBTQ+ families, and people who choose not to have children. There\u2019s no single model or \u201cperfect mom\u201d here: our articles share guidance without making anyone feel guilty. For any concern about a child\u2019s health or development, your pediatrician, family doctor or a child psychologist remains the best person to ask.<\/p>\n<h2>Where to start<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/top-phrases-help-children-express-emotions-444372\">What to say instead of \u201cstop crying\u201d<\/a>: five phrases that help children express their emotions.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/monster-under-the-bed-really-means-childhood-fear-428271\">The monster under the bed<\/a>: what this classic childhood fear really means and how to respond.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/eldest-daughter-syndrome-confirmed-by-science-study-reigniting-debate-430888\">Eldest daughter syndrome<\/a>: what research says about the responsibilities often placed on firstborn girls.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/be-a-mother-but-stay-slim-she-breaks-the-silence-pressure-weighs-on-young-mothers-432933\">The pressure to \u201cbounce back\u201d after birth<\/a>: one mother speaks out against the demand to stay thin.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/you-post-pictures-of-children-on-social-media-heres-something-you-probably-dont-know-428755\">Posting photos of your kids online<\/a>: what to know before you share.<\/li>\n<\/ul>\n<h2>Frequently asked questions<\/h2>\n<h3>Can fathers get postpartum depression?<\/h3>\n<p>Yes. Some fathers go through sadness, irritability or anxiety after a baby arrives, sometimes called the \u201cdaddy blues.\u201d When these symptoms last for several weeks, it may be paternal postpartum depression, a condition recognized by health professionals. Intense fatigue, feeling useless or withdrawing from others are warning signs: talking to a doctor is the first step toward getting support.<\/p>\n<h3>What is positive parenting?<\/h3>\n<p>Positive parenting, close to what is often called gentle parenting, guides children through listening, explanation and encouragement rather than punishment, yelling or humiliation. It isn\u2019t the same as being permissive: rules still exist, but they\u2019re set with respect. A growing number of countries have also banned corporal punishment of children, spanking included.<\/p>\n<h3>How can you tell if your child is being bullied at school?<\/h3>\n<p>Several signs can raise concern: refusing to go to school, repeated stomachaches or headaches in the morning, slipping grades, damaged or missing belongings, isolation, trouble sleeping, mood changes after using their phone. Start the conversation calmly, without dramatizing, then contact the school. Many countries also have helplines dedicated to bullying and cyberbullying.<\/p>\n<p>Keep exploring: all our <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\">psychology topics<\/a> on emotions, <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/confiance-en-soi\">Self-confidence<\/a> to find your footing again after a baby arrives, <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/bodypositive\">Body positive<\/a> to see your body with kindness, and <a href=\"https:\/\/www.ma-grande-taille.com\/en\/sante\/grossesse\">Pregnancy<\/a> for the months before birth.<\/p>","parent":6138,"count":703,"filter":"raw","cat_ID":6139,"category_count":703,"category_description":"<p>The Parenting section of The Body Optimist supports moms, dads and every kind of family through everyday life with kids: raising children, emotions, school, relationships and the mental load. Advice from child development professionals, explainers and personal stories approach parenting without guilt, whatever your family looks like.<\/p>\n<h2>What you\u2019ll find in the Parenting section<\/h2>\n<ul>\n<li><strong>Raising kids<\/strong>: teaching children to share, setting limits without yelling, praising effort over intelligence, with ideas drawn from positive parenting.<\/li>\n<li><strong>School and bullying<\/strong>: helping your child feel good at school, spotting the signs of bullying and knowing how to respond.<\/li>\n<li><strong>Postpartum for both parents<\/strong>: your body after birth, the <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/sleep-deprivation-fatigue-loneliness-the-reality-of-young-mothers-433661\">exhaustion and loneliness of new mothers<\/a>, and postpartum depression in fathers, still too little known.<\/li>\n<li><strong>All kinds of families<\/strong>: single-parent, blended and same-sex parent families, parents with disabilities, with more stories in our <a href=\"https:\/\/www.ma-grande-taille.com\/en\/societe\/lgbtqia\">LGBTQIA+<\/a> section.<\/li>\n<li><strong>Family relationships<\/strong>: your bond with your own parents, toxic families, overbearing grandparents, sibling rivalry.<\/li>\n<li><strong>Life choices<\/strong>: wanting children, or not, discussed without judgment or social pressure.<\/li>\n<\/ul>\n<h2>How do you set limits for your child without yelling?<\/h2>\n<p>Setting boundaries without yelling relies on clarity and consistency more than strictness. Keep instructions short and positive (\u201cwe walk in the hallway\u201d rather than \u201cdon\u2019t run\u201d), get down to your child\u2019s eye level and look at them. Announce transitions ahead of time to head off meltdowns when an activity ends. Name your child\u2019s feeling without giving in on the rule: \u201cYou\u2019re angry because the screen is turning off. I get it, and it\u2019s bath time.\u201d When tension rises, stepping out of the room for a few seconds beats raising your voice. Some parents even <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/giving-orders-to-a-singing-child-an-unusual-trick-to-avoid-shouting-428727\">sing their instructions<\/a> to keep things light. No parent is perfect: apologizing after you lose your temper also teaches your child how to repair a relationship.<\/p>\n<h2>Our take on parenting<\/h2>\n<p>Parenting doesn\u2019t rest on mothers alone: we also talk about dads, co-parents, blended, single-parent and LGBTQ+ families, and people who choose not to have children. There\u2019s no single model or \u201cperfect mom\u201d here: our articles share guidance without making anyone feel guilty. For any concern about a child\u2019s health or development, your pediatrician, family doctor or a child psychologist remains the best person to ask.<\/p>\n<h2>Where to start<\/h2>\n<ul>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/top-phrases-help-children-express-emotions-444372\">What to say instead of \u201cstop crying\u201d<\/a>: five phrases that help children express their emotions.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/monster-under-the-bed-really-means-childhood-fear-428271\">The monster under the bed<\/a>: what this classic childhood fear really means and how to respond.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/eldest-daughter-syndrome-confirmed-by-science-study-reigniting-debate-430888\">Eldest daughter syndrome<\/a>: what research says about the responsibilities often placed on firstborn girls.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/be-a-mother-but-stay-slim-she-breaks-the-silence-pressure-weighs-on-young-mothers-432933\">The pressure to \u201cbounce back\u201d after birth<\/a>: one mother speaks out against the demand to stay thin.<\/li>\n<li><a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/vie-de-maman\/you-post-pictures-of-children-on-social-media-heres-something-you-probably-dont-know-428755\">Posting photos of your kids online<\/a>: what to know before you share.<\/li>\n<\/ul>\n<h2>Frequently asked questions<\/h2>\n<h3>Can fathers get postpartum depression?<\/h3>\n<p>Yes. Some fathers go through sadness, irritability or anxiety after a baby arrives, sometimes called the \u201cdaddy blues.\u201d When these symptoms last for several weeks, it may be paternal postpartum depression, a condition recognized by health professionals. Intense fatigue, feeling useless or withdrawing from others are warning signs: talking to a doctor is the first step toward getting support.<\/p>\n<h3>What is positive parenting?<\/h3>\n<p>Positive parenting, close to what is often called gentle parenting, guides children through listening, explanation and encouragement rather than punishment, yelling or humiliation. It isn\u2019t the same as being permissive: rules still exist, but they\u2019re set with respect. A growing number of countries have also banned corporal punishment of children, spanking included.<\/p>\n<h3>How can you tell if your child is being bullied at school?<\/h3>\n<p>Several signs can raise concern: refusing to go to school, repeated stomachaches or headaches in the morning, slipping grades, damaged or missing belongings, isolation, trouble sleeping, mood changes after using their phone. Start the conversation calmly, without dramatizing, then contact the school. Many countries also have helplines dedicated to bullying and cyberbullying.<\/p>\n<p>Keep exploring: all our <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\">psychology topics<\/a> on emotions, <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/confiance-en-soi\">Self-confidence<\/a> to find your footing again after a baby arrives, <a href=\"https:\/\/www.ma-grande-taille.com\/en\/psycho\/bodypositive\">Body positive<\/a> to see your body with kindness, and <a href=\"https:\/\/www.ma-grande-taille.com\/en\/sante\/grossesse\">Pregnancy<\/a> for the months before birth.<\/p>","cat_name":"Parenting","category_nicename":"vie-de-maman","category_parent":6138}]},"_links":{"self":[{"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/posts\/442654","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/users\/8385"}],"replies":[{"embeddable":true,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/comments?post=442654"}],"version-history":[{"count":4,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/posts\/442654\/revisions"}],"predecessor-version":[{"id":444290,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/posts\/442654\/revisions\/444290"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/media\/442655"}],"wp:attachment":[{"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/media?parent=442654"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/categories?post=442654"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.ma-grande-taille.com\/en\/wp-json\/wp\/v2\/tags?post=442654"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}