Category: NF Stories

Wyatt was diagnosed with NF type 1 when he was 2 years old. He will be turning 13 years old on May 10th. Wyatt has many, small café au lait spots, as well as some gross and fine motor skill delays. He has four hamartoma tumors in his brain, and has soft tissue tumors on…

May is NF Awareness month. This year, to grow awareness, we are going to be sharing stories of how this disease impacts the lives it touches. Chris has his own story that is only his to tell, but being his wife we have a story of our own. When we got engaged, Chris finally had…

Katherine (or Katy) is 5 years old and was diagnosed with NF1 in October of 2018. Our first sign of any issues was a “lazy eye” or so we thought. Katy has a few cafe au lait spots, bilateral optic gliomas, small stature, multiple neurofibromas, speech delays, learning disabilities, and three tumors from the base…

Noah was 7 months old when he was diagnosed with NF1.  He is almost 3 years old now. Noah has cafe au lait spots, Lisch nodules, pectus excavatum, delayed speech, and low muscle tone. Noah’s diagnosis of NF was the result of a spontaneous mutation; no one else in our family has Neurofibromatosis. Noah loves the…

Our daughter Janna was diagnosed with neurofibromatosis type 1 when she was five months old. Doctors tell us that it caused a heart defect, which she had open heart surgery for when she was thirteen months old. Janna has many other medical issues from NF1 including hearing issues, an optic glioma (tumor on the nerve…

My husband and I had never heard of NF1 until May 2015 when our daughter, Ifunanya or Ify (pronounced “eff-ee”), had her 1 year old check-up. Her pediatrician asked us if we had noticed the freckling and cafe-au-lait spots on our daughter from her toes to her neck. I responded with a slow yes knowing…

Jay, 10 Mos. Our sweet baby boy Jay was diagnosed with NF Type 1 in May of 2018 at six months old. We spotted his first café au lait spot when he was one day old in the hospital. The nurse said it was just a birthmark. By two months old he had more. After…

Sam, 33 I was diagnosed with neurofibromatosis type 1 (NF1) while being treated for scoliosis when I was 4 years old. I had to have a spinal fusion with a long recovery.  Later, beginning at age 10, I ran into several other NF-related conditions: two brain tumors, shunt revisions, knee surgery, bone grafting to repair…

Levi, 8 This is our beautiful son, Levi Howard. He was diagnosed in March of 2017 with NF1 when he was seven years old. We quickly discovered that he has a brain stem tumor, many cafe au lait spots (brown flat birthmarks), a learning disability and ADHD. He is also very short for his age…

We inherited NF1 from our mom, Shirley, who passed away from breast cancer at the age of 53. She fought cancer three different times. Since then research has shown that people with NF1 have an increased risk of cancer…especially breast cancer…and that cancer is often more aggressive in people with NF1. Stacey struggles with physical…