My son who is now 21 years old has neurofibromatosis. I am the carrier of the gene. My oldest son has it too. My son Chris is an amputee because there was a fibroma that was growing on his tibula. It caused his shin bone to bend at an 38 degree angle. He broke it and has had many surgeries. His doctor told us that sometimes when you take the foot off it fools mother nature. When he was nine we did the amputation and the bone has healed. He is an inspiration to many. Right now he is doing snowboarding lessons. I am so proud of him. Both my boys (as well as me) had learning disabilities.
I am glad to hear that someone finally brought this disease to life. I never knew much about it.