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Our little girl Casey was diagnosed last year with NF1 at the age of one and a half years old. Since then we have been to many different doctors, and she has been through numorous amounts of scans and MRIs. She has gliomas on her optic nerves, and in the brain, which they say is very common in children with NF1. Although they are common, the doctors say that they can become cancerous. Its just a watch and wait game, with more testing in the future. It seems everytime we turn around there is something else. Now she has problems with her eyes, they started to turn into her nose, so yes back to another doctor. Glasses and patching for a month. Now surgery! Of course with Casey and all the children that have this diagnosis absorb a lot of financial distress, we can only hope and pray that they will find a cure! Please donate to help find that cure!!!!! Thank YouOur NF Heroes
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... |
IL - Rosie Colucci Rosie is just one of Illinois’ NF Heroes...but she is the reason our family and so many who know her are showing their... MORE... |
NY - Kevin Martin My name is Kevin Martin. I am 12 years old. When I was only a few weeks old, I developed café-au-lait spots on my body. ... MORE... |
MA - Dylan Thompson Dylan is 9 years old and has neurofibromatosis. In the past, he has suffered significant visual losses such as his depth... 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... |
WA - Xavier CompoMy son was just recently diagnosed with NF1, for two years we have been trying to figure out what has been going on w... 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... |
IN - Gabriel Helpingstine Gabriel was diagnosed with neurofibromatosis (Type 1) at the age of two. This disorder can cause tumors to grow ... MORE... |
SC - Shanna Byrd I was diagnosed with NF2 in 1990. I have had two brain surgeries and 2 spinal surgeries to date. I lost my hearing ... MORE... |
NV - Cailin Devine Developed by the Children’s Tumor Foundation, Racing4Research raises money to benefit NF research through corpo... MORE... |
OH - Seth Abram Hello! Seth has struggled with painful tumors in his foot for most of his life. We didn't know the tumors were cause... 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... |
