Cole’s Crew walks for NF

By on June 5, 2009

by Susan O’Neill
SUGAR GROVE—When people meet 10-year-old Cole Rutter for the first time, they see a happy little boy with a big smile, a love for baseball and life, and a lot of friends. What they may not realize is that he has a disease most children his age cannot pronounce.

But Sugar Grove resident Cole Rutter, a fourth-grader at Kaneland John Shields Elementary School, takes his disease in stride. He calls his neurofibromatosis (NF).

Neurofibromatosis is a genetic disorder that causes tumors to grow along the nervous system. While not all NF patients suffer from the most severe symptoms, all live with that possibility. NF is a progressive disease that currently offers no cure or effective treatment.

“The past three years have brought Cole challenges no child should have to endure; scoliosis, headaches, seizures, itching, learning disabilities, high blood pressure, tumors and neurofibromas, small visible tumors on his nerve endings,” his mom Julie said. “But we have hope. We need everyone’s help to build awareness and help find a cure.”

Cole and his crew are taking part in the eighth annual Great Steps for NF walk on Saturday, June 6, at the Naperville River Walk. Cole’s goal this year is to raise more than $10,000 to help fund and support Neurofibromatosis research.

That might sound ambitious for a 10-year-old, but Cole is currently at $8,978. Last year, 75 to 100 people joined Cole in his walk. Among them were neighbors and friends and a number of teachers from Cole’s school, where his father Dan also teaches.

Julie said there have been recent important advances in NF research. That is why she and Dan feel so strongly about increasing the awareness of the disease and supporting the current research.

“Your donations are very much appreciated and they do make a difference,” she said.

To watch a video of Cole’s joys and challenges and to make a donation, visit

To learn more about NF, visit or