Local youth helps fuel the cure for NF

By on October 24, 2010

by Lynn Meredith
SUGAR GROVE—Cole Rutter looks like any other kid, but his resiliency is tested on a daily basis. This Sugar Grove 12-year-old was born with neurofibromatosis (NF), a disease that can cause tumors to grow on nerves anywhere in the body. It can lead to blindness, brain tumors, high blood pressure, head-aches, cancer, learning disabilities and severe chronic pain.

The Racing4-Research program of the Children’s Tumor Foundation recently named Cole an NF Hero for 2011. He joins youths from all over the United States in promoting awareness of this disorder and raising money for research.

Cole will have the chance to attend the Rolex 24 Hour Race in Daytona in January, for which race-car drivers donate their time and vehicles to race for 24 hours to raise money for NF research. Last year, they raised $422,000 in 611 laps, all of which went to medical research.

Cole became an NF Hero after attending a camp for kids with NF in Virginia last summer. He was able to meet others who struggle with many of the issues he does.

“I don’t like having NF, but I haven’t let it stop me from doing things I like to do,” Cole said. “ I love to play sports, especially baseball. I’m involved in spring and fall baseball.”

But Cole’s mom, Julie Rutter, said that life often revolves around doctor’s appointments.

“We have seven upcoming appointments,” Rutter said, as she listed the MRA’s, MRI’s, and echocardiograms that Cole faces. “We don’t just go for a check-up and not go back for two years. Life revolves around appointments.”

Cole has suffered from brain tumors, bone deficiencies, headaches, scoliosis, high blood pressure and ADD.

Aside from all their medical issues, kids with NF often have learning difficulties.

“They learn differently,” Rutter said. “They need help processing information and with executive functioning. They need more help.”

Kids with NF must learn to live with teasing and rejection from peers. They also must learn to live with uncertainty of what the future brings. At any time, tumors can begin to grow and cause complications. A few summers ago, Cole had a tumor on his jaw. It was removed, and so far there is no sign it is growing back.

“It looked like I had a giant gumball in my mouth,” he said.

Rutter said that with all the doctors her son sees, he always hopes the next appointment will be a “talking appointment.”

“A talking appointment is when there is no surgery or no IV’s,” she said. “He likes those.”

On race day in Daytona, the names of the NF Heroes will be painted on the side of the race cars. The kids can sign their names on the car and have their pictures taken with the drivers.

NF Hero
Cole Rutter on Facebook: www.facebook.com/pages/Coles-Crew-Racing-4-Research/168337943183489
Cole’s donation page: