beckwith wiedemann syndrome

Hello all! Just wanted to bring this to anyone's attention. My baby was recently diagnosed with beckwith wiedemann syndrome . This is very rare congenital disorder that effects 1 in every 13,000 children . She is more prone to tumors and childhood cancers and she will also have an overgrowth disorder. I'm am spreading awareness to everyone because a lot of doctors don't even know what this is.. My pediatrician is still trying to figure out a plan for baby but we did see a geneticist and have testing done for this. Please help me spread the awareness because kids go on and on without being diagnosed. Please pray for my baby girl❤️❤️❤️thank you