Category: NF Stories

Ana is 10 years old. She was diagnosed with neurofibromatosis type 2 when she was seven. Her genetic disorder was a result of a spontaneous mutation. It has been a long road for Ana, as she has had 34 tumors between her brain and spine and multiple surgeries. She has learning disabilities, right foot drop,…

Maverick is the first in his family to be diagnosed with NF1. He started showing symptoms at 2 months old. He has multiple café au lait spots, a larger head, he had bowed legs as a baby, and he has low muscle tone that requires physical therapy, occupational therapy, and speech therapy. He has issues…

Hi, my name is Jean. My son, Collin, was diagnosed with NF1 at the age of 1. He was ahealthy child at birth. I immediately noticed he slept much longer than his older sister did at thesame age. As he grew I noticed that he had a number of birthmarks. They were the color of…

Hi I’m Karissa, I’m 27 and I have NF1. My story may be a little long, but sometimes that’s the way it is with NF. It’s the disorder that for some just keeps on “giving” and for all the questions and concerns we have it seems like there are always more questions. First, I have…

My little guy’s name is Conor and he is 1 year-old and has been diagnosed with NF Type 1.  Conor’s dad also has NF1, but his two brothers have tested negative for NF.  At the moment, he has about a dozen café au lait spots and high blood pressure. Unfortunately, the diagnosis of NF came…

Our three-year-old  son, Benjamin, was diagnosed with Neurofibromatosis Type 1 one year ago due to multiple cafe-au-lait spots (birthmarks) and Lisch nodules on his irises. He has had one brain MRI and has appointments with ophthalmology, neurology and podiatry regularly. Ben has low muscle tone, especially in his core, which causes all kinds of issues,…

Aurorah (Rory), now age 9, was diagnosed with neurofibromatosis type 1 shortly after her sixth birthday.  She was born with café au lait spots all over her body as well as freckling in her armpits and groin areas and a big spot on her chest. The spots were always passed off by her doctors as…

This is my son Joel. He was born with neurofibromatosis type 1.  Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. He was not diagnosed until he was six months old, after he kept getting more “ birthmarks”. We…

Hi! My name is Jackson and I’m 10 years old!! I was diagnosed with NF1 at 18 months old. It’s been a wild ride for me and my family, but I couldn’t be a happier boy!! So far I’ve been faced with failure-to-thrive (I eat through a g-tube in my stomach), global development delays, ADHD,…

When Eli was three years old, he was diagnosed with neurofibromatosis type 1, something we had never heard of before. That’s also when we found out about his first brain tumor. We very quickly learned that there isn’t a cure or even a way to manage this tumor producing disorder. It attacks the nervous system…