Les médecins ont dit que Tiffany ne survivrait pas à son premier jour de vie puisque très peu d'enfants survivent en naissant avec le syndrome de Jarcho Levin, mais elle n'a pas seulement survécu au premier jour mais elle a continué à vivre chaque jour comme si c'était le dernier. | Vitamine
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Le syndrome de la Belle au bois dormant, ou syndrome de Kleine-Levin, fait partie des troubles du sommeil les plus rares et fascinants. 🛌✨ Les personnes atteintes peuvent dormir pendant 20h par jour ! | Poisson Fécond
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Meet Aseel! At just 7 years old, she’s already shown incredible strength. Born with Jarcho-Levin Syndrome and tibial hemimelia, Aseel has undergone multiple surgeries and two external fixators as part of her treatment journey. She and her brother Fazaa—who shares the same rare condition—are both cared for by Drs. Paley and Feldman’s teams. They undergo routine spine and rib expansion surgeries every few months to support their growth and mobility. We’re so proud of Aseel and all the progress she
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