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updated: 6/19/2014 9:46 AM

Wheaton mom shares son's experience with tumor-causing disorder

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  • Sheri Scheidt of Wheaton will walk in Great Steps for NF to help fund research into neurofibromatosis. Her son, Alex, 16, has the disorder.

    Sheri Scheidt of Wheaton will walk in Great Steps for NF to help fund research into neurofibromatosis. Her son, Alex, 16, has the disorder.
    Courtesy of Sheri Scheidt


"You have a tumor."

For most, those words from a doctor would plunge us into a breath-stealing spiral of uncertainty. Is it cancer? Can it be treated? What's going to happen to me? How will I feel? Will I survive?

For a person with neurofibromatosis, both the diagnosis and the emotions are a common occurrence.

The disorder is caused by a genetic mutation that allows some cells to grow unchecked. For most patients, tumors grow on or just under the skin, and some people have tumors develop near the spinal cord and along nerves throughout the body, including the optic nerves. Most often the tumors are benign, but occasionally can become malignant. Those with neurofibromatosis have a slightly increased risk for brain cancer as well as other forms of cancer and leukemia.

Sheri Scheidt of Wheaton heard the diagnosis of neurofibromatosis for her son, Alex, when he was just 3. Together, they have navigated his symptoms and treatments. And together Sheri and Alex, now 16, will walk Saturday, June 21, to raise awareness of the disorder and money for research.

The Great Steps for NF walk treads three miles along the Naperville Riverwalk, with proceeds supporting St. Charles-based Neurofibromatosis Midwest and its efforts to fund research into treatments.

Today, Scheidt tells us more about neurofibromatosis and her reasons for joining Great Steps for NF.

Sheri Scheidt

Robert Frost immortalized a walk in the woods when he wrote "The Road Less Traveled," a poem I have always loved. Why did Frost choose that road less traveled? I surely don't know, so when I was asked to write a bit about why I walk, I thought, "Hmm, why do I?"

The quick answer would be Alex, of course. We were placed upon a road less traveled when my son was diagnosed with neurofibromatosis type 1 at the age of 3.

He and I attended our first Great Steps for NF walk 12 years ago and had so much fun, we've been walking it ever since. We have been joined by new friends and family, growing our Team Alex every year.

At first glance, neurofibromatosis is a difficult word to pronounce and most people have never heard of it. For those affected by NF, neurofibromatosis becomes part of their daily vocabulary.

NF is a genetic disorder and involves the uncontrolled growth of tumors along the nervous system. You may have seen NF if you've ever seen someone with skin tumors, or fibromas, all over their face and/or body, but this is just one symptom. It also can cause a host of other problems, including cognitive issues such as learning disabilities and attention deficit disorders; bony abnormalities and scoliosis; poor gross- and fine-motor coordination; headaches; seizures; blindness; deafness; and cancer.

Everyone with NF is affected differently, and many have only a couple of these complications. 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 their lives 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. It is a real disease in need of more awareness, funding and research. Team Alex walks to bring awareness about NF.

NF research has come a long way in the past several years. The mechanism of the gene and the varied problems it causes is proving to be a key to many disorders. Researchers say NF research will benefit roughly 175 million Americans, including 65 million with cancer because 70 percent of cancers follow the same pathway as NF.

It is also believed that NF research will benefit 50 million Americans with heart disease, 35 million with learning disabilities, 25 million with memory loss, and 30,000 with brain tumors. Team Alex walks to raise funds that go directly to NF research.

And while our main goals are to raise awareness and funds, there are other reasons we walk in Great Steps for NF. Recently, a family member with a 4-month-old daughter was diagnosed with a brainstem tumor. A friend's child suffers from an optic glioma while we struggle daily to manage learning disabilities.

All of these challenges can become quite overwhelming, but having the community of support from the NF Inc. Midwest organization and the Great Steps for NF walk is invaluable. Team Alex walks to bring hope for the future.

This is where you come in. Lace up those shoes, join Team Alex and walk with us at Naperville's Riverwalk. The NF walk is on a nice, smooth, tree-lined, 2.5-mile, handicap-accessible course winding by the DuPage River in downtown Naperville.

This year's walk is Saturday, June 21, with registration beginning at 9 a.m. with a continental breakfast, followed by the walk, lunch, music, raffle, kids games and very good company. It's family friendly and fun.

If you are unable to make it to the NF walk, you can still join the team. Please consider sponsoring Team Alex. Donations can be mailed directly to: Great Steps for NF, Neurofibromatosis Inc. Midwest, (write in the note: Team Alex/#20), 473 Dunham Road, Suite 3, St. Charles, IL 60174. Every bit helps. Many thanks for your support!

I leave you with another poem I love. This one, written by Alex in eighth grade, is why I walk -- "and that has made all the difference."

I Can Overcome

By Alex S.

I can overcome

The hardships of Neurofibromatosis

My feet walk for the cure

Joined by the millions of feet of my friends

Although mine are weakened

… I still walk on

Even though some would complain in my place

… I still walk on

Even though there is no end in sight

… I still walk on

Even though kids think I am weird, they don't know me,

… I still walk on

I can overcome

With my friends, we can find a cure


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