Opinion

Why do we walk for neurofibromatosis? Because we can

Posted June 03, 2009 11:00 pm

By Susan O'Donnell

Each weekend thousands of people take to the streets of our communities, walking and running to raise money for charities. Every one of them has found a cause to believe in, a bit of hope through helping. And every one of them has a reason for being there.

Today, Susan O'Donnell of Naperville shares how her daughter Gracie's experience with neurofibromatosis moved her family to join Lombard-based Neurofibromatosis Midwest Inc.'s Great Steps for NF walk.

When first approached with the idea to write an essay explaining "Why We Walk" in the Great Steps for NF walk, I have to admit-both my husband and I were a bit at a loss for words as we stared blankly at each other. "Why we walk" as a question had never come up or been discussed between us.

Our NF story began when our daughter Gracie, now 4 years old, was diagnosed with neurofibromatosis Type 1 (NF1). At the time, Gracie was only a few months old. Our first thought was "What is NF?" - immediately followed by "What will happen to our daughter?" We did some research and found that NF affects people in many different ways.

We found that NF is a genetic disorder of the nervous system that causes tumors to grow on the nerves anywhere in the body at any time. It is progressive and one of the most common genetic disorders in the United States, affecting one in every 3,000 to 4,000 births. There is no known cure. This was ultimately the most devastating news of all.

The prognosis for Gracie was fuzzy at best. She may grow tumors, she may not. There may be any number of problems including disfigurement, bone deformities, scoliosis, visual impairments, brain and spinal tumors as well as learning and developmental disabilities.

Right now, our Gracie has a few tumors in her neck and is dealing with some speech and developmental delays. As the disorder is progressive, we just don't know from day to day and year to year what Gracie may be faced with in the future. We soon realized the biggest problem was that although we were armed with all the knowledge and facts we could find out about NF, we were left feeling completely helpless to do anything.

So we walk. We walk because we can.

Last year we decided as a family that we needed to get actively involved in finding a cure for NF. We were introduced to NF Midwest Inc. and the Great Steps walk. We were extremely excited to be part of an event that raises money to fund the research and create awareness that is crucial to fighting this crippling disorder.

At the walk last year, we met some amazing people. Although we realized that every person we met with NF has different challenges, our struggle is unifying and our goal is universal - raise money to find a cure for NF. It is what we can do.

Join us at 10 a.m. Saturday, June 6, in downtown Naperville at the Riverwalk. The walk is a celebration of life and the desire of many to find a cure for NF. If you are unable to join us at the walk, but are interested in donating to this worthy cause, you can visit our Web site, firstgiving.com/susanodonnell, or you can visit NF Midwest Inc. Web site, nfmidwest.org/Great_Steps.html, for additional information.

We appreciate your support!

Great Steps for NF When: Registration at 9 a.m. Saturday, June 6; walk at 10 a.m. Where: Naperville Riverwalk Cost: $20 in advance for adults, $12 for ages 4 to 10; $25 on site; no fee for participants who raise $100 or more Details: 3K route; breakfast, lunch, prizes, kids games and music Info: (630) 932-8111 or <a href="http://www.nfmidwest.org/Great_Steps.html" target="new">nfmidwest.org/Great_Steps.html</a> Donate To Gracie O'Donnell's team: <a href="http://www.firstgiving.com/susanodonnell" target="new">firstgiving.com/susanodonnell</a> To Neurofibromatosis Midwest Inc.: <a href="http://www.nfmidwest.org/donation.html" target="new">nfmidwest.org/donation.html</a>

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