We are really excited and honored to be a part of the NF Northeast Team for the Falmouth Road Race on Sunday August 18th!
Ever since our youngest son Cameron was diagnosed over a year ago at 3 months old, we have become more and more involved with the organization and spreading awareness for the cause. Joe was diagnosed with Neurofibromatosis at about 3 years old and is a spontaneous mutation, meaning no one else in his family had the diagnosis. He has been followed at Mass General for years now and luckily hasn't had any serious complications. We started noticing cafe au late spots, or birth marks, on Cam just before he turned 3 and we knew what we were facing immediately. He started seeing Neurology and Opthamology at Boston Children's Hospital shortly after and is followed every 6 months. So far he is doing great! Aside from having slightly low muscle tone, his speech is expanding so fast we can't keep up, and he is developing is own little loveable personality!
Neurofibromatosis, pronounced neuro-fibroma-tosis, is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF causes unchecked growth of tissue along the nerves. This can put pressure on affected nerves and cause pain, severe nerve damage, and loss of function in the area served by the nerve. Problems with sensation or movement can occur, depending on the nerves affected. The condition can be very different from person to person, even among people in the same family who have the NF1 gene. There is a 50% inheritance rate but it can also occur spontaneously.
Thank you for your support!