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Dakota was suspected of having NF1 at 2 months old when the doctor noticed her cafe au lait spots. She was officially diagnosed at 9 months old by a blood test. She is now 5 years old and in Kindergarten. She loves to learn and is thriving in school. Dakota currently has an optic glioma on both optic nerves and the chiasm. She gets MRIs every 6 months and so far it has been stable and has not needed any treatment. Our hope is that it eventually goes away and that she will never need to go on chemotherapy. We are actively raising money for research in hopes that in Dakota's lifetime a cure will be found for NF!Our NF Heroes
OH - Bryce Gossard Wow, what a great day we had on May 23, 2010 at the Family Fun Day and Car Show on behalf of Bryce in Kenton, Ohio. Ther... MORE... |
NY - Brianna Worden Hello, and thank you for visiting our page!! Brianna is once again on a mission to help CTF Fuel the Cure for Neurofi... MORE... |
NE - John Schafer Neurofibromatosis is a genetic disorder that causes tumors to grow on any nerve in your body at anytime. It affects 1 in... MORE... |
WI - Owen Polak Owen has NF. NF has has challenged Owen every day since he was 6 months old. Owen is currently 9 years old. For eight ... 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... |
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... |
VA - Evan Perdew Evan was diagnosed with NF when he was 3 months old. In 2009, doctors found a large plexiform neurofibroma in his right... MORE... |
IL - Cole Rutter My name is Cole Rutter. I am 12 years old. When I was only a few weeks old, I developed café-au-lait spots all over my... MORE... |
OH - Amie PetrasI was first diagnosed with NF2 when I was in high school. At the time, I was seventeen years old and not too many doctor... MORE... |
NY - Jonathon White My name is Jonathon White, I am 12 years old and I have neurofibromatosis (NF). I live in Staten Island, New Yo... MORE... |
AL - James Gerrell My son James was first diagnosed with NF1 at the age of 4. He has lived with this for the past 24 years. He has had seve... MORE... |
MA - Celia LaBarbera Looking at Celia, one only sees a vibrant, happy playful 6-year old girl who is bursting with life! Her family's ... MORE... |
