MO - Nicole Riley

Nicole was diagnosed with a large Plexiform tumor in her lower abdomen and legs on her first birthday. There is the good, the bad and the ugly. The plexi keeps her from being able to walk on her own. The ugly came in January 2009 when the plexi which has caused damage to her kidney and bladder required a bypass of bladder. Unfortunately, the plexi continues to grow at a fast pace. Our prayers are to keep the plexi at a stand-still or slow pace to enable the research to catch up to make it melt away.

Nicole has a wonderful support system with family and friends. She attends Holy Child school, where she enjoys learning, singing, dancing, and playing with her friends. When she is not in school, she enjoys playing with her dolls, shopping and watching movies. Her Mickey Mouse goes everywhere we go, including countless doctor appointments and every MRI, dinner, travel, church and school.

Nicole's brother has taken his quest to teach the students of the Seckman middle school about NF. They are working on fundraisers for helping find a cure to NF. Our team is also joined by friends and family who are helping our family as we race to find a cure to give Nicole the ability to walk and be independent.

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Meet Our R4R NF Heroes

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CA - Andrew Vigil

CA - Andrew Vigil

Hi, my name is Andrew and I was diagnosed with NF1 when I was 5 years old. I am now 10 years old and...

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OR - Zachary Odegard

OR - Zachary Odegard

I am 15 years old and I was diagnosed with NF 1 when I was 3 years old. Neurofibromatosis is a g...

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CA - Raymond Thomas

CA - Raymond Thomas

Raymond was diagnosed with NF1 at about 2 years old. Since then he has begun to work with a speech...

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GA - Jack Burke

GA - Jack Burke

Jack is a kind, energetic, inquisitive, adorable 8-year-old who also has NF. He is a fantastic big b...

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MA - Dylan Thompson

MA - Dylan Thompson

Dylan is 10 years old and has neurofibromatosis. He has suffered significant visual losses such as b...

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MO - Nicole Riley

MO - Nicole Riley

Nicole was diagnosed with a large Plexiform tumor in her lower abdomen and legs on her first birthda...

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GA - Katherine Thompson

GA - Katherine Thompson

I want to thank everyone for visiting this site to become more educated regarding neurofibromatos...

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NY - Julia Perfetti

NY - Julia Perfetti

Four years ago our life changed drastically when our beautiful ladybug girl was diagnosed with NF. J...

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NC - Ethan Wray

NC - Ethan Wray

Our story begins, like so many others, with the news that parents never want to hear. Your chil...

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SC - Nicholas Biering

SC - Nicholas Biering

If you are reading this page, you probably already know who I am, but just in case…. My n...

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FL - Dylan Brain

FL - Dylan Brain

On April 15, 2009, 6:30 pm our lives were changed forever. An MRI showed that our 3 year old son (tw...

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MA - Molly McBryan

MA - Molly McBryan

Molly was diagnosed with NF1 at 18 months. Doctors have found a tumor on Molly's optic nerve, a si...

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GA - Jocelyn Driscoll

GA - Jocelyn Driscoll

Hi my name is Jocelyn Driscoll. I was diagnosed with Neurofibromatosis Type 1 at age 3. Neurofibroma...

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MI - Izzy Mick

MI - Izzy Mick

Izzy has Neurofibromatosis. This disorder can result in tumors to develop anywhere in her bo...

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UT - Wyatt Enman

UT - Wyatt Enman

My name is Wyatt and I have a disease called neurofibromatosis (NF1). This is a disease that effects...

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CA - Madison Branaugh

CA - Madison Branaugh

Neurofibromatosis is no fun. I am so thankful of your support to help us find the cure. I cannot exp...

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KS - Jeffrey Owen Hanson

KS - Jeffrey Owen Hanson

Jeffrey Owen Hanson is a philanthropic artist from Overland Park, KS. Visually impaired from an op...

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CA - Brandon Tibbets

CA - Brandon Tibbets

Brandon Tibbets was born with NF 1. He has a bone deformity in his leg due to his NF. His bone fract...

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