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Erin was diagnosed with neurofibromatosis type 2 (NF2) sixteen years ago and has dealt with many changes as a result. |
More NFE Heroes
Erin EarleErin was diagnosed with neurofibromatosis type 2 (NF2) sixteen years ago and has dealt with many changes as a ... READMORE |
Carson Rowe Baxter Rowe and his wife Marci first noticed the brown spots on Carson in 2008. “We thought they were birth marks or freckles but my wife noticed that they got bigger,” said Baxter. They searched the Internet and discovered that such marks could be called cafe-au-lait spots, a symptom of neurofibromatosis. Marci then took Carson to the pediatrician. The pediatrician told her about NF and they were referred to a specialist. Carson had a 54 percent chance of ... READMORE |
Noah Tyrybon At Noah’s kindergarten graduation, when the kids were asked what they want to be when they grow up, Noah, among all the policemen, firefighters, and teachers was the lone "calculator.” The now six-year-old Noah is excited about starting first grade this fall. He enjoys bowling, baseball and golf. Noah was diagnosed with NF1 just before his first birthday, exhibiting café-au-lait spots and axillary freckling. “Since then, we've never noticed any other detrimental effects from the disorder,” said Frank Tyrybon, Noah’s dad. “We visi... READMORE |
Savannah Grace “Gigi” Kast Gigi will do just about anything for a bag of Skittles. She loves sugary treats. She likes things that are pink and she enjoys playing in dress up clothes. But Gigi's diagnosis of Neurofibromatosis (NF1) brings many challenges to the life of a 7-year-old. Gigi has endured the growing number of café-au-lait spots, macules and two broken tibias. She sports bifocals, pink of course, for estropia and cross-eyedness. She has iris Lisch nodules, small benign tumors, on her eye. An opt... READMORE |