Australia: What's a child's life worth? In Sasha's case, you could say a million dollars. The little girl learned to walk, talk, and find her independence. Then, when she turned four, started losing it. She has a hidden glitch in her DNA. Something so rare it doesn't even have a name. Doctors told her parents there was nothing they could do. So, go home and just love her. To that, they said no. Note: The specific DEE diagnosis isn’t mentioned; however, many families may relate to this family's experience.↗

Australia: Submissions to the Senate Inquiry into Epilepsy in Australia relating to confirmed developmental and epileptic encephalopathies (DEEs), probable or possible DEEs, and other severe childhood-onset epilepsies associated with developmental, cognitive or lifelong disability. The aim is to make these submissions easier for families, educators, therapists, clinicians, researchers and others with an interest in DEEs to find.↗

There is no clear, simple way of communicating about DEE-SWAS to help me talk about it with my children, families and friends, and the teachers, health, disability and community professionals involved in our child’s life.↗

India: A five-year-old boy, Rishi, who lost his ability to speak and respond, was diagnosed with Landau-Kleffner syndrome. This rare neurological disorder, identified by Dr. Sudhir Kumar, caused him to appear deaf despite normal hearing. Prompt treatment with anti-seizure medication led to a remarkable recovery, restoring his speech and communication within months. Read the full article here: https://economictimes.indiatimes.com/magazines/panache/misdiagnosed-a-5-year-old-boy-stopped-talking-the-culprit-a-rare-treatable-brain-disorder-shares-neurologist/articleshow/128961294.cms?from=mdr#google_vignette

United States: Rosie Tomes experienced her first seizure when she was seven years old just days before her family moved from Missouri to San Antonio. What began as a frightening medical emergency would lead her parents, Shawna and Jonathan, to discover that Rosie has a rare and complex form of epilepsy that affects her ability to move, speak and learn. Read the full story: https://www.christushealth.org/connect/your-health/childrens-health-and-wellness-stories/rosie-pediatric-epilepsy-eses-diagnosis

Australia: Adeline Hanna is a playful little girl with a cheerful sense of humour. Her mother, Jessamy Eccles describes her as "creative" and says she likes to pretend she owns a coffee shop and serves drinks to people. But at almost seven years old, Adeline is intellectually delayed for her age. "Adeline is very impulsive, it's like being with a toddler," Ms Eccles said. Read the full article here: https://www.abc.net.au/news/2024-12-05/epilepsy-ndis-funding-falls-short/104620578

Ireland: The talented football player opened up about her life away from the sport, including how she suffered from a rare condition Landau Kleffner syndrome when she was younger. Read the full article: https://www.rsvplive.ie/news/celebs/dublin-lgfas-niamh-crowley-suffered-32706610

Namibia: Olivia Mupwedi (40) from Ongwediva has been facing the immense challenge of caring for her son, By-Faith Lwiishi (8), who was diagnosed with Landau-Kleffner syndrome two years ago. Lwiishi, once a normal and active child, now suffers from a disorder of the nervous system, making him unable to walk, talk, eat or perform any other activities.
Read the article: https://www.namibian.com.na/mother-struggles-to-care-for-son-with-rare-condition

United States: When Jules and Jason Hunter felt like they were losing their son Calvin to severe epilepsy that caused his motor and communication skills to decline, they turned to Mayo Clinic for a second opinion. A doctor and a "dogtor", as his nametag says, helped Calvin regain abilities and his smile.
Read the full article: https://newsnetwork.mayoclinic.org/discussion/dogtor-and-doctor-return-joy-to-boy-with-severe-epilepsy

United States: When Ozzy turned 4 years old, Stefanie started seeing odd behaviors. He became defocused, frazzled, and sometimes spontaneously destructive. He had trouble finding words and stringing sentences together. Processing new information and remembering old information became difficult at times. All of this made him frustrated. His teachers started noticing things, too. He seemed to be in his own world and stopped engaging with classmates in preschool. Ozzy was experiencing seizures, but they were not obvious to the untrained eye. Read the full article: https://healthier.stanfordchildrens.org/en/living-a-whole-life-with-half-a-brain

United Kingdom: When little Noah was diagnosed with the rare disease Landau Kleffner syndrome, doctors told his parents Madeka and Ryan, ‘Don’t look it up because it will really scare you’ (charity case study). Visit webpage: https://action.org.uk/research/family-stories/noahs-story

United States: Twenty-four-year-old Caroline Love of Sugar Land, Texas, sits in front of the microphone as the “On Air” sign lights up and she begins to speak – which for someone who at one time couldn’t speak or hear is something of a miracle. “ Ever since someone from National Public Radio’s Code Switch podcast spoke to my journalism class my freshman year at Texas Christian University, I’ve wanted to work for NPR,” Caroline said. A rare neurological condition nearly stopped that dream before it ever started. But Caroline’s mom, Mary, found someone at The University of Texas Health Science Center at Houston (UTHealth) who could make sure Caroline’s future dreams could still one day be realized.
Read the full article: https://www.utphysicians.com/story/student-uses-inspiration-of-a-time-she-couldnt-speak-to-bring-a-voice-to-others

Español: Este libro está inspirado en la historia real de Pepe, un niño que a los 5 años le diagnosticaron el Síndrome de Landau Kleffner, que afecta simultáneamente a la memoria, el lenguaje y la capacidad de aprendizaje. Se trata de una epilepsia refractaria sin cura (aún), pero entre todos lo conseguiremos!

English: Where Does Pepe Hide His Memories?
This book is inspired by the true story of Pepe, a boy who was diagnosed at the age of five with Landau-Kleffner syndrome (LKS), a condition that affects memory, language, and the ability to learn at the same time. It is a form of drug-resistant epilepsy for which there is currently no cure - but together, we can make a difference.

Find out more: https://www.familiaysalud.es/familias-que-leen/cuentos-para-educar-y-crecer/discapacidad-y-enfermedades-raras/donde-se-esconden

United Kingdom: The seven-year-old with a rare form of epilepsy has made an "amazing" recovery after beginning a medicinal cannabis oil treatment, her family said. Sienna Richardson, from Telford, was diagnosed with Landau Kleffner syndrome. The family secured a prescription from a private practice for her - which her mother said had been a "miracle". They are now campaigning with other families to ensure the treatment is more widely available on the NHS.
Read the full article: https://www.bbc.com/news/uk-england-shropshire-55273948

United Kingdom: Like most six-year-olds, Sienna is a kind, caring, lovely little girl. She attends Lawley Primary School where she has always done well as a bright and confident pupil. In July last year, her parents noticed something was wrong, thinking Sienna had problems with her hearing. By August, their little girl was complaining of very bad headaches, so they took her to see their GP who advised them to give her junior paracetamol. Read the full story: https://lawleyoverdale-pc.gov.uk/whats-on/siennas-story

United Kingdom: The family of a six-year-old girl are trying to raise £15,000 for a cannabis-based treatment after she was diagnosed with a rare form of epilepsy. Sienna Richardson was found to have Landau Kleffner syndrome after showing problems with her communication skills. Read the full article: https://www.bbc.com/news/uk-england-shropshire-51721084

United States: Landau specialized in movement disorders such as Parkinson’s disease, but his interests ranged widely. With Frank Kleffner, PhD, of the Central Institute of the Deaf, he identified and described Landau-Kleffner syndrome, a rare disorder in which children lose the ability to speak and respond to language. He also studied how patients fared who were revived with CPR after their hearts had stopped beating, and concluded that the risk of severe, debilitating brain damage was underappreciated. He advocated for more limited use of the procedure. Read full article: https://medicine.washu.edu/news/obituary-william-landau-professor-emeritus-93/

According to Dr. Pestana Knight, who specializes in pediatric epilepsy and neurological disorders at Cleveland Clinic Neurological Institute’s Epilepsy Center, CSWS can be difficult to diagnose by physicians who are not experts in epileptology. The disorder can be caused by different diseases that affect the developing brain including brain malformations, genetic or metabolic conditions.
Read the full article: https://my.clevelandclinic.org/patient-stories/345-immunotherapy-for-rare-form-of-epilepsy-revives-young-girl

United States: Perched on a bench at the viewing platform of the Robert W. Willaford Railroad Museum, the 23-year-old museum volunteer is donned in denim overalls, thick brown boots and a neon safety vest. A wooden whistle is cupped in his hand. When a train horn bellows, Evan Gales giddily responds.  “Toot, toot for me!” Evan says. “All aboard!” Locomotives are more than a hobby for Evan - they’re a way he copes with his Landau-Kleffner syndrome. Read the full article: https://www.plantcityobserver.com/life-rails-meet-biggest-train-fan-town

United States: Over the next two weeks, Sara and Beth began to notice a change in Cody’s speech. Sentences were now replaced with a single word, a distinct regression for a chatty 4-year-old. Instead of his usual “I want a Coke,” he would just say “drink”; “want to go outside and play” was replaced with “bye,” and “I want to go to sleep” was now one single word: “nightie.”
Read the full article: www.discovermagazine.com/boy-interrupted-16218