When Nicolas was 3 months old his mom Sheila started to see what she thought were birth marks.  She began to wonder, "are these really birthmarks"?  "We took Nico to his 4 months checkup and that is when our world was flipped upside down," said Sheila. The doctor said they looked like CALS --- or cafe au lait spots. After several appointments with different doctors to address the CALS and curvature in his back, Nico was diagnosed iwth NF1. He has had some developmental delays and hypotonia, but he has gotten therapy to help some of these issues.

Despite the challenges of NF, Nico is a wonderful little boy who likes to smile and play. "He looks at you and smiles and it just melts your heart," said Sheila. "He flirts with all the ladies, too." 

A recent MRI of the brain and eye orbit revealed enlargement in the nerves behind both eyes. Nico's family will be seeing an oncologist/hemotologist soon to find out the next step.  The waiting has been the hardest part for his family. "I am taking it one day at a time," said Sheila. "I am spending as much time with Nico making fun memories both for him and myself.  Nicolas is a strong little angel.  I have also decided that I am going to do my part to raise awareness about NF." 

Kobe was diagnosed with NF1 close to his second birthday.  Kobe currently has two benign brain tumors which are being monitored, but not treated.  He is a sweet and fun child who laughs all the time.  Kobe is affected with delayed development. He isn't talking or signing, but he makes great eye contact and baby talks consistently.  Kobe's health is good at this time, and his family hopes and prays for minor NF1 complications. They are also raising NF awarenes in their community and money for the Foundation.  Kobe's father, Ken, is trying to train so he can join the NF Endurance team in the future.

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 three 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 have delayed her speech, walking, balance and coordination. She also has numerous fibromas, or benign tumors, the size of green beans, under her skin on her scalp. She has a tumor in the center of her brain. 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.

"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.

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!"