Our Geoff Redick tells us about neurofibromatosis, a genetic disorder that causes slow growing tumors in the nervous system.

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"Most people don't even know about it. There are a lot of people who have N F, who have had it in their family for generations, that don't even know," Connie Sorman said.

It's a long and scary word: Neurofibromatosis, a genetic disorder that causes slow growing tumors to grow on the nervous system.

Sorman said, "NF can be inherited from a parent or it can be a spontaneous mutation."

One in 3,000 human beings has neurofibromatosis, including Connie Sorman's son, Jesse.

"I was diagnosed when I was six-months-old," Jesse Sorman said.

Since 1998, Jesse's life has been a constant stream of doctor's visits, tests and surgeries.

Jesse Sorman said, "I have a tumor in my right leg and it affects me, having one leg grow faster than the other."

"His balance and coordination is not the same as other kids," Connie Sorman said.

Neurofibromatosis is not rare, but few people have heard of it. Pediatricians routinely check infants for the condition by looking for one simple criteria.

"Multiple birthmarks. And what we worry about is these typical, what we call cafe au laits, which are these coffee colored birthmarks that will present when the child is first born or right after birth," said Dr. Jennifer Mulbury of Golisano Children’s Hospital.

When a child is identified with cafe au laits, the brain, spine and skeleton are x-rayed, areas where the tumors will grow.

Mulberry said, "This is a gene and if you have the NF gene, you have it. We can't change that. However, research is being done, which is why it's so important that we're raising awareness and money to help us look towards what we can do to change the effects of the disease."

Which is why Connie Sorman, president of the local Children's Tumor Foundation, has dedicated an annual Walk for NF in Rochester. It's her way of coping with something her son has taken in stride.

"He'll be going through a grueling PT procedure after a surgery, with a big beaming smile on his face. It just amazes me," Connie Sorman said.