I am not mad.  When I first learned that my son had NF, we too thought that it was "elephant man" disease or something like it.  I apologize if my email sounded mean. 

I wish we could find some answers for this disease and get to word out about it.  When my son was first diagnosed, I had NEVER heard of it.  My son has a lot more wrong with him than just NF.  He has a trach and a G-tube and has had to have rods put in his back and now we have to figure out why he is losing bone mass and watch to make sure that he doesn't break a bone.  I keep hearing that to expect him to die of "old age" is not a realistic expectation.  If I had a nickel for everytime I was told that he wouldn't see the next day, I would have enough money to research NF for years.

 

Hope everyone is having a great day :-)

Amy