Hundreds walk in Naperville to raise awareness of neurofibromatosis
For just a moment, look at life through Heather Reyes' eyes.
Imagine your preschool-aged daughter coming to you in pain and you trying to comfort her, though you know it's not growing pains or the bumps and bruises most children her age experience.
Picture yourself in the hospital, watching as a sedative puts her to sleep and staff wheels her away for an MRI that will show whether the pain is caused by a growing tumor pressing on a nerve. You wish you didn't have to put her through this, but you know its necessary for her health. And you know it won't be the last time - for the pain, for the testing, for the tumors, for the treatment.
Olivia Reyes has neurofibromatosis.
Doctors explained to the family when Olivia was just 6 months old that she may have the genetic disorder that would cause tumors to form around nerves anywhere in her body. Just after she turned 1, a genetic test confirmed she has the most common form of the disorder.
Symptoms are different for every NF patient and depend largely on where the tumors form and what nerves they put pressure on. Some tumors are hardly noticeable, some cause a little tingling in legs or arms, some cause pain or impair motion, some block vision. In a less common form of the disorder, tumors develop on cranial nerves and cause hearing loss or disrupt balance.
Though researchers have identified the genetic mutation that causes neurofibromatosis, the primary treatment option is surgery to remove the tumors causing pain or other symptoms and a cure is still out of reach.
On Saturday about 900 NF patients and their families and friends will come together for the Great Steps for NF walk to raise money to fund research in the hopes of finding new treatments and ultimately a cure. The walk, organized by the St. Charles-based NF Midwest, is the largest walk in the country to benefit NF research. The non-competitive three-mile stroll steps off at 10 a.m. along Naperville's Riverwalk.
Heather Reyes and Olivia, now 4, will be there taking steps for Olivia's future. Today, Reyes of Aurora tells us more about Olivia's experience with neurofibromatosis.
Heather Reyes
We are the Reyes family, from Aurora, and we walk in support of our oldest daughter, Olivia.
I had never heard of neurofibromatosis before Olivia's 6-month well-child checkup at our pediatrician's office. She was born with a few darkly pigmented spots on her skin, which the pediatrician said were café au lait spots and nothing to be concerned with. At that checkup, I mentioned that she'd developed a few more, which was the first time neurofibromatosis entered the conversation.
Shortly after her first birthday, her diagnosis was confirmed via genetic testing with a specialist at Comer Children's Hospital.
The primary effect of NF-1 on Olivia's life right now has been low muscle tone and global developmental delays. She received physical, speech and occupational therapies through Early Intervention until she turned 3, and now receives them as part of Indian Prairie Unit District 204's excellent special education program at Prairie Children Preschool.
The hardest part about coping with this diagnosis has been the never-ending quality of this journey and the constant worry about when more severe effects will occur.
She's had two incidents in her short life in which she's complained of pain and other symptoms that have led her doctor to order an MRI under sedation to rule out problematic tumors. It's very hard to watch your preschooler be sedated and wheeled away for testing, and while we're so grateful that in both of those cases no tumors were found, we live with the reality that we could face a very different scenario tomorrow.
She is also beginning to notice the differences between herself and her peers. She cannot run or jump very well due to her low muscle tone, and she tends to be easily intimidated in situations involving large groups of her peers because she knows she's not as strong as they are.
Her low oral motor muscle tone makes her speech difficult to understand, so she talks much more freely with adults than with her peers because she doesn't want to be misunderstood or laughed at for sounding funny. Every new skill she has to learn is so much more difficult for her than for typical children her age.
NF Midwest has been an invaluable resource to us. Her specialist gave us their information when he diagnosed her and, through the group's informational packet, Facebook group, Symposium and walks, I've been able to connect with both adult NF patients and fellow parents to share our joys and our worries and be inspired by all of their indomitable spirits.
We walk to connect with and support others in the NF community. We walk to advocate for more effective treatments and hopefully someday a cure. We walk to raise awareness. Most importantly, while NF certainly plays a part in the course of Olivia's life, we are determined not to let it define her, and that is why we walk.
Readers can donate to our team's fundraising efforts by visiting firstgiving.com/fundraiser/HeatherReyes/great-steps-4nf-naperville-2015, or to NF Midwest at any team by visiting nfmidwest.org.
If you go
What: Great Steps for NF
Why: Proceeds support NF Midwest's efforts to find treatments and a cure for neurofibromatosis
When: Walk begins at 10 a.m. Saturday, June 6; on-site registration and check-in begins at 8:30 a.m.
Where: Riverwalk Grand Pavilion, west of Centennial Beach, 500 W. Jackson Ave., Naperville
Cost: $25 for adults, $12 for ages 4 to 10, free for younger children; pledges and donations encouraged
Details: Walk is about three miles; continental breakfast before the walk with food, raffles and activities afterward
Info: nfmidwest.org