Mavia was diagnosed with NF 1 when she was just a few months old. She is now four years old and is a lively and fun loving little girl. "No matter her struggles, she doesn't let anything keep her down," said Karrie Evenson, Mavia's mother. "She is a fighter and she makes me stronger."

Presently Mavia attends a special school during the day that provides her with therapies to help her developmentally. Mavia struggles with learning disabilities and low muscle tone, which for a while, delayed her speech, walking, balance and coordination. She also has cafe au leit spots all over her body, numerous fibromas, or benign tumors, the size of green beans, under her skin on her scalp and also has an optic glioma. Mavia travels often to St. Louis to see Dr. Gutmann, a neurologist with Washington University, who is watching for any lesion growth. Tumor growth could bring chemo treatments. They travel every three months to get MRI's and to visit the Neuro-Oncology team.

"She [Mavia] has a way of making you feel so inspired and uplifted that it's hard to have a frown," said Karrie. "Mavia finds ways to make laughter out of any situation. She is hilarious!"

Despite delays in communication, Mavia has developed a love for talking. "She will talk your ear off if you let her!" said Karrie. Mavia loves to call herself a princess, and she dances around to music in the kitchen while singing into a spoon. She colors and paints, loves to read books and cuddle, just a fun loving 4 yr old.

Mavia's mom Karrie is involved with the NF Endurance Team.  "I run. I run not only for her, but for all of the others with NF, because in my eyes they are all heroes. They give me strength and courage to do something that I once thought was impossible for someone like me. I was just a mom and artist and had no experience in running -- ever. I thought to myself, 'Mavia is a fighter, she has courage, and strength, I can do this for her, I know it.'"

That was it, after that Karrie said that she came down with the "running bug." Through running with NFE, Karrie has experienced the feeling of being a part of something so much bigger than herself.  "Run! Run for NF, RuNFor a reason, Run for our heroes, and let's find a cure together!"