02/28/2026
Today is Rare Disease Day, and we recognize and celebrate the many children we serve who face the challenges of rare conditions so courageously.
Raanan is one of those amazing children. Facing significant delays in his early development milestones, his family turned to the expert team at Children's Nebraska. In 2021, he became just the 28th person worldwide to be diagnosed with a rare condition called CLTC-related disorder. CLTC is characterized by a broad spectrum of symptoms – including developmental delays, intellectual disability, epilepsy, low muscle tone, walking challenges and abnormal findings in the brain, eyes or gastrointestinal tract.
"It was terrifying but a relief to hear of such a rare genetic condition after years of frustration," Raanan's mom, Makayla, said. "Being a first-time mom, I knew something wasn't right, but getting that diagnosis felt like finally someone listened."
Now 8 years old, Raanan has seen a multidisciplinary team of pediatric specialists at Children's for his ongoing care needs – including Behavioral Health, Gastroenterology, Genetics, Neurosciences, Orthopedics, Pediatric Surgery, Rehabilitation Services and more. With a tenacious spirit and strong support system, he has a full life like any other child, attending school and riding bikes with friends.
"The specialists we've had have been great," Makayla said. "I love everyone's attitude at Children's and how they work with Raanan. They're so happy to see him, and they actually listen. I am really grateful."
