Nancy Stevens
I have neurofibromatosis and two of my three children have it also. My first born boy now 9 and my baby girl now 5. We all have NF-1. I can understand your heart ace. My five year old has an unoperable brain stem tummor. My nine year old has many u b o's in his brain that were shown on a MRI. He suffers from cronic migraines as do I. If I could be of any support write to me. We live in Southern New Jersey and go to Childrens Hospital in Philadelphia.