Well where do I begin. I will start that I am 37 years old I have neurofibromatosis type one. I was a spontaneous mutation and I was diagnosed at infancy . As a result I was born with a bowed right tibia which resulted in 13+ surgeries and I wore a leg brace growing up. My leg got weaker due to the pseudoarthrosis and in 2013 I fractured my leg 7 separate times. I elected to have my leg amputated below the knee in May of 2014. I have had two revision surgeries on it since then and I am awaiting one more. Also I have a brain tumor and hundreds of fibromas on the skin. The biggest thing I do suffer from now is a widespread nerve pain throughout my body.
My son Jordan is 12 years old and he also has neurofibromatosis type one. Jordan has an astrocytoma brain tumor, spinal cord tumors, learning difficulties, and a scoliosis which requires him to wear a back brace 23 hours a day.
My son Jeremy is 10 years old and he has a brain cyst, spinal cord tumors, liver lesions, numerous tumors along the side of his neck as well as one that wraps around his trachea. To top it all off he also has acid reflux disease and celiac disease which I know are not related to the neurofibromatosis. Jeremy also has something called Dural Ectasia which is a fluid buildup in the sacral region of his spine.
My two boys visit lots of doctors annually and have had numerous MRIs. I wish more than nothing that I could wave a magic wand and take this away from my children. They suffer daily from pain and ridicule from people that don't understand. But, despite all of their setbacks they are two amazing, energetic boys. Who try very hard and try and compete in sports. Their health issues may slow them down a bit but will never deter them and make it so they stop trying.
We are all fighters and we may have NF but, NF doesn't have us!