Beckwith wiedemann syndrome

My 7 month old daughter was just diagnosed with beckwith wiedemann syndrome and I was just wondering if anyone else has this or who have children with this syndrome. I just kind of want to know what to expect with out all the medical Mumbo Jumbo I know what it is and how it works. Just trying to understand how her life will be

Hi my 6 month daughter has just been diagnosed with BWS have you had any responses on here yet? I cant see any and just wondered what advise you have been given if any? What symptons does your daughter have? Thanks

Noone else has replied but I did find a support group on Facebook that has helped tons. I don't really have any advise because its so new to me as well. My daughter only has an umbilical hernia and her tongue is big but not huge just slightly larger than most babies. What symptoms does your daughter have?