Hi. It's scary when you first get the diagnosis but it really does get easier. The first year is probably the hardest as you come to terms with the diagnosis and there will be lots of hospital appointments initially but after that, everything settles and its only the 3 monthly scans and blood tests. Are you in the uk? If so where abouts? Do you have a pediatrician familiar with BWS? We're in Bristol and my son is almost 2 years. He's doing great and is a very healthy, happy (and cheeky!!) Little boy. You can request to join the Facebook group, it's a great group!