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My name is Jamie and I am 14 years old. I have NF 1. I have a large neurofibroma wrapped around my airway that is compressing in my airway. I have a trach and have to sleep on a ventilator. I have granulation tissue, Neurofibromas and gangliomas that are growing inside my airway, above my trach so far, that have blocked my airway completely once and almost 100% several other times. I have to have surgery on my airway every other month to have them removed. I have scoliosis and have rods in my back that I have had since I was 5 and my back is curving below the rods and will have to be repaired in the future.Our NF Heroes
CA - Rob Schafer Thank you for choosing to visit my site as many of the other NF heros' stories are quite inspiring. I started thi... MORE... |
IN - Jesse Markland Jesse is 5 years old and has neurofibromatosis (NF1). This means he has multiple café-au-lait spots, many smal... MORE... |
NY - Andrew Snyder I had never heard of neurofibromatosis until my sweet grandson, baby Andrew, was diagnosed last year with NF1. Two fa... MORE... |
UT - Wyatt Enman My name is Wyatt and I have a disease called neurofibromatosis (NF1). This is a disease that effects the central nerv... MORE... |
GA - Jack Burke Jack is a kind, energetic, inquisitive, adorable five year old who also has NF. He is a fantastic big brother, and loves... MORE... |
CA - Raymond Thomas Raymond was diagnosed with NF1 at about 2 years old. Since then he has begun to work with a speech therapist and dev... MORE... |
MO - Mason Lockmiller Mason has been sick since he was 3 weeks old but did not show any signs of NF so no one asked. He saw so many doctors an... MORE... |
GA - Delaney Watts I still remember the day we found out Delaney has NF - 1. I think it is one of those memories you wish you could forget... MORE... |
OR - Zachary Odegard I am 15 years old and I was diagnosed with NF 1 when I was 3 years old. Neurofibromatosis is a genetic disorder that... MORE... |
IN - Gabriel Helpingstine Gabriel was diagnosed with neurofibromatosis (Type 1) at the age of two. This disorder can cause tumors to grow ... MORE... |
TX - Kaleb Grigg My name Is Kaleb and I was diagnosed with NF1 at the early age of 10 months old. When I was born my parents noticed a... MORE... |
FL - Dylan Brain On April 15, 2009, 6:30 pm our lives were changed forever. An MRI showed that our 3 year old son (two at that time) Dyla... MORE... |
