Sugar Grove man reaches for 'normal' while coping with neurofibromatosis

If you happened to see Cole Rutter enjoying a ballgame at Wrigley Field, you wouldn't know the avid baseball fan endures back pain from the tumors growing along his spine.

And those in class with him at Waubonsee Community College might not realize that as the Sugar Grove man builds the foundation for a career as a sports trainer, he has a tangerine-sized tumor in his shoulder that's confounding doctors with the way it's wrapped itself around so many nerve endings.

That's how neurofibromatosis affects Rutter — tumors grow spontaneously around nerve tissue, causing pain and leading to surgeries to remove the tumors that can be excised without causing greater damage.

The tumors are a constant with neurofibromatosis, a symptom just about everyone with the genetic disorder can expect. But everything else about the disorder varies — from person to person, from one moment to the next.

Some people have tumors develop on or just below the skin, others get them on the optic nerves, and some, like Rutter, get them along the spinal cord and throughout their bodies. Sometimes a tumor will grow rapidly; sometimes it'll grow slowly or even stop growing. Most often, the tumors are benign, but occasionally one will become cancerous.

With no cure, management of the disorder's symptoms is critical for those with NF. Neurofibromatosis Midwest stands ready to help people in Illinois, Indiana, Iowa, Wisconsin, Kentucky and the eastern portion of Missouri find information and medical specialists, even coordinating with hospitals to offer 12 NF clinics and to fund research.

The organization also helps children with NF attend Camp New Friends in Virginia, where kids and teens can enjoy a traditional summer camp surrounded by peers and adults who understand and share their experiences.

The Great Steps 4 NF walk raises money to support NF Midwest's endeavors. Cole Rutter and his family will join the walk Saturday, June 2, in Naperville, just as they have for the past 15 years.

Today, his father, Dan Rutter, tells us more about how NF has affected Cole and his family.

Dan Rutter

Neurofibromatosis — never in our lives had we even heard the word mentioned, let alone did we know what it meant.

That all changed the day our pediatrician became skeptical of the hundreds of café au lait spots our son, Cole, had throughout his body. From that point forward, neurofibromatosis has captured the lives of not only our immediate family, but our extended family, friends and community.

Neurofibromatosis is real, and it can affect families more than anyone can imagine.

On that day, Cole was 18 months old and we had already begun to notice a delay in speech and some learning difficulties in his early childhood. We didn't realize anything was different until further testing indicated he suffered from NF1. We were taken aback, to say the least.

We left the testing completely unaware of the details of this disorder. Like any parent who worries about their child, we went home and researched everything we could find (completely against doctor's orders, of course) about neurofibromatosis. What we found out was alarming.

This is what we read: Neurofibromatosis is a genetic disorder and involves the uncontrolled growth of tumors along the nervous system. It is the most common genetic disorder caused by a single gene.

While not all NF patients suffer from the most severe symptoms, all live with the uncertainty of knowing whether they, too, will be severely affected because NF is a highly variable and progressive disorder. Currently, there is no cure or effective treatment.

Of course, we tried to ignore the “worst case scenarios,” but you can imagine what was going through our heads.

NF affects one in 2,500 births and affects all races and genders equally. It is not contagious. Roughly half of NF cases are inherited, the other half are spontaneous mutations. Cole falls under the latter — spontaneous mutations — which means no one else in our family has it. He is the first.

Cole's story

Through further visits and testing with doctors, we began to see many NF symptoms surfacing. Many times, from an outsider's view, NF is difficult to notice.

The learning disabilities really started to become evident in second grade, so it became our task to fill his teachers in on what was happening and where help was needed through an individual education plan. Doctors made us aware of the scoliosis forming and a need for orthotics that would improve his spine.

The first signs of physical impairments occurred in fourth grade. One morning, Cole was just bouncing on our bed and we questioned why he would have a wad of gum in his mouth so early in the day. Unfortunately, it wasn't gum, but a tumor that had formed in his jaw. The tumor was removed, but came back four years later. More pieces of the tumor were removed.

Cole is now 19 years old, and the tumors continue. A recent MRI determined that tumors have developed on his spine (at least 15 have been identified). During that scan, a large “tangerine-sized” tumor was identified on his shoulder, which is currently being biopsied. Doctors are trying to determine how to remove it, but when it is surrounded by so many nerves, many difficulties arise.

Watching your child go through so many MRIs, CT scans, X-rays and surgeries becomes unfathomable.

We've wondered, “Why Cole?” We have come to realize there's a reason behind it. It has allowed us to see how one child, our Cole, can withstand the pain many adults struggle with daily. We have seen his strength to overcome what many people might walk away from.

If you didn't know Cole, you wouldn't know anything is wrong. He is a happy-go-lucky kid who doesn't allow the disorder to hinder his activity.

Cole is a sports fanatic, primarily a baseball junkie. He participated in baseball all the way through his sophomore year in high school. Any chance he has to put on the glove, he does. He might not be the best athlete on the field, but he is the most positive and the player giving the most effort.

Whenever he is not playing baseball, he is watching, including several visits to Major League stadiums. Many of his doctors appointments are out-of-state, so if there's a game going on nearby, he's pushing to go. His enthusiasm for sports has led him to pursue a career in physical therapy. He has taken his disorder in stride and tries to lead a normal life.

Great Steps 4 NF

Cole's resiliency has allowed us to realize that if he can try to lead a normal life, we should too. We've also come to understand that our family, specifically Cole, isn't alone in this fight. So many others affected by NF, as well as other disorders, are going through the same emotions every day. This is where we have found tremendous support.

We have joined Great Steps 4 NF and have raised awareness as much as possible. The support we have received from Neurofibromatosis Midwest itself has been a great find for us and an extremely invaluable resource. Through the organization, many of our concerns can now be answered without a doctor visit. Many of these same organizers have fought, and are fighting, the same battle, so having their insight is always helpful.

Since we began attending the Great Steps 4 NF walk when Cole was 4, we have always deemed it “Cole's Day.” Friends and family have helped us, and many others, raise awareness and funding to get doctors closer to finding beneficial treatments and, someday, a cure. Not only is the a time to provide awareness, but the event also funds opportunities for those affected so that they can, hopefully, lead a normal life.

The walk is not only beneficial to our family and friends, it is a day where everyone dealing with NF can simply come together and celebrate their journeys. Participating in the walk is a great way to build support and share stories, concerns and discoveries with everyone in attendance. Many of those participating need this support to carry on.

This year Cole's Crew will be in full force, doing everything possible to generate awareness as we parade around the Naperville Riverwalk. We walk for not only Cole, but also for those others that NF Midwest has connected us with.

Please join all of us in building awareness on Saturday, June 2. For information about the Great Steps 4 NF walk, you can visit Cole's page at nfmidwest.rallybound.org/Great-Steps-4NF-Naperville-Walk/ColeNF.

Great Steps 4 NF walk to benefit Neurofibromatosis Midwest

<b>When:</b> Check-in begins at 8:30 a.m. Saturday, June 2; walk begins at 10 a.m.

<b>Where:</b> Naperville Riverwalk, starting from the Riverwalk Pavilion, 912 Honorary Sindt Memorial Court

<b>Cost:</b> $20 for adults, $12 for ages 4 to 10, free for younger children; $25 for adults at the walk

<b>Info:</b> <a href="http://www.nfmidwest.org">nfmidwest.org</a> or christine@nfmidwest.org