Neurofibromatosis

Neurofibromatosis I had never even heard of this word until a doctor told me I needed to have my then 4 year old see a specialist. I asked him to repeat the word a few more times. Our lives have never been the same as our Sami does indeed have Neurofibromatosis. This genetic disorder (his caused by spontaneous mutation) not only causes tumors to grow anywhere in the body including the brain and spine but also causes bone and endocrine issues, and learning disabilities. Every cell in the body has the potential to become a tumor. So, we have created this foundation to raise research dollars for a disorder with NO CURE and NO treatment. We just recently found out our Sami has six tumors growing inside him. One is fast growing and called disfiguring (doctors words)-- we are headed for surgery the end of this month. It has been a crazy time. We really thought we would raise money for research and a preventative drug would be found before he started growing tumors. THis thought in the past 5 weeks has been replaced as we now will be cutting tumors out of him and watching the others every six months via MRI. We will continue to raise research dollars and focus on wellness and prevention. Join us in our efforts and check back for our weekly guest bloggers who will blog about wellness. "I gotta feeling" is my daughters favorite song and I will leave with that --I gotta feeling together we will find a preventative drug and create wellness.