Perrie Smith lives with more than 50 birthmarks all over her body. The biggest one is on her right leg; she calls it the birthmark the size of   Alabama. When Perrie was younger, she had to get a tumor removed from her upper lip and she had to endure comments from kids at school. "When I go to the pool, I see girls and boys that have only one birth mark that is barely noticeable," said Perrie. "If I am wearing shorts people sometimes stare at my leg which makes me feel kind of bad." In dance class, girls would come up to Perrie and start counting the birth marks on her back. "I may have NF, but I am living a life that I want to live and not letting anyone get to me." 

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!"

Dallas was born at East Alabama Medical center in Opelika, Ala., and appeared to be a healthy baby boy. Over the first year of life, Dallas thrived and grew, until one day while drinking from his bottle he began to project vomit.

His mom, Sharon, could tell he had ingested some of the vomit in his lungs. He had difficulty breathing. His breaths were raspy and difficult.  Sharon and her husband, Garrett, took Dallas to the doctor. After various tests, the doctors placed Dallas on medication for reflux.

However, Dallas began to regress. “I started to notice spots on him….more like birth marks, lots of them,” said Sharon. “At first I thought he was getting into something, and I kept trying to wash them off.” 

The spots did not wash off.  Dallas was diagnosed with NF at age 2. NF has affected Dallas’s walking, speech and developmental skills. He also has scoliosis. Dallas wears leg braces and a back brace every day. The braces are hard and uncomfortable, but he can still walk with the assistance of a wheelchair. When Dallas gets tired he retires to a wheelchair.

Dallas is a honors student at Tuskegee Public Elementary School, in Tuskegee, Ala. Dallas loves to play baseball with his East Alabama Miracle League team, the Dodgers. Dallas is also a member of Jubilee Christian Fellowship International. Dallas has three older brothers, two older sisters and a puppy named Mimi.