This Story of NF was submitted by Lainey’s mother, Whitney.
It all happened very suddenly for my daughter. Lainey was about to start kindergarten when she was diagnosed. We had gone to a routine school checkup needed to start kindergarten. The pediatrician was new and noticed Lainey had many birthmarks. We began the conversation on getting tested for NF. Her results came back positive, and she had a random gene mutation. Lainey has NF1, and after her first MRI, we found out that she had two optic nerve gliomas—one on each side. Lainey is now eight years old and about to start third grade. 
The main struggle was the onset of many appointments and testing. Getting used to being at the hospital often and explaining to a young one what is happening. Lainey has also always been smaller for her age. (She was) diagnosed with ADHD and gets itchy at times. She often has headaches and gets tired easily walking for long distances. She usually doesn’t like to participate in field trips at school that involve a lot of walking. Lainey is on a 504 plan at school and is doing really well. I am very proud of her. She is very open about her diagnosis and having tumors. We pray together about it often and have made friends from St. Louis Children’s Hospital who have the same diagnosis. I was a single mom for most of my life. It was difficult to take off work to get her to all her appointments and pay for the gas and everything on my own. Thankfully, last year, I met my now husband, who is a police officer and the best stepdad. He goes with us to our appointments and has helped make my life easier in many ways.
(The defining moment has been) watching my daughter grow and become proud of who she is. And she always speaks about her diagnosis and spreads awareness at a young age. I have seen her be very brave and courageous at appointments, and I am very proud of her. 
Lainey loves to sing and dance! She is very girly and enjoys coloring, watching movies, and snuggles. She’s in third grade and has a very bright and fun personality.
Favorite Song
Sunday Best
Dream Superpower
To be a mermaid
Favorite Food
Mexican
Fun Fact
I love cats
