gail depratto
Lynn, This is the first time I have read about someone saying that thier parent had the disease as well. I have it, but show no signs or the marks. However, my daughter was first diagnosed with a brain tumor at age 14. She is now 32, and has a 2yr and 10 month old son. Jackie has just lost her voice through the removal of a tumor,in back of her neck. She still is recovering. She will be on a g2- tube until she learns how to manage the loss of throat & tongue reflex. It won't all come back, though. You are more than welcome to write me. It is nice to share experiences of us people who have to live in the nf1 world. People don't always understand what we all have to go through.