My NF story starts with a little girl named Myleigh Grace Marshall (also known as (Myleigh Moo). Myleigh was around 16 months old when our pediatrician noticed a growing number of café au laits and referred us for genetic testing. The test showed that Myleigh had NF1, a condition we had never even heard of until 6 weeks prior. Soon after there were eye doctor appointments and MRI scans scheduled for my not-yet-2-year-old.
I didn’t always get to go to her doctor appointments with my wife, but she would call me with the results. Every time I was fearing the worst until the all clear call came. I’m scared for Myleigh always, but appointment days are especially scary. When Myleigh was 3, a yearly MRI showed a lesion on her brain stem. As a parent, that news was tough to swallow. After years of more and more scans to monitor the lesion, Myleigh was released from brain tumor clinic. Right now she is healthy, and her only day-to-day issue with NF is migraines. Even though everything is good today, NF is still a scary and uncertain part of our futures. Being a part of the NF community and CTF helps our family. It’s a blessing to feel like we are doing something to ensure more possibilities for a healthy future for our girl and the many others living with NF.
My wife Ginger has been involved with the NF Endurance team for years. Our family has hosted Little Heroes of Southwest Arkansas in our small town for 5 years now. It blows my mind every year of how much support we get from the people in our community as well as other towns and counties close to us. I feel blessed to have met so many people here that support our efforts. Many have joined the NF Endurance team to support Team Miles for Myleigh, and hardly a day goes by I don’t see an End NF shirt in our community. I’ve always done my part by being behind the scenes and doing whatever the wife tells me to do to help make sure her training or the events we’re hosting go off without a hitch.
This year, that changed! My job recently started a gym membership program for employees. I knew I needed to get in shape – and not the round shape that I am now – so, I started meeting coworkers at the gym at 5:15am, 3 days a week. A couple weeks into my new gym routine, my wife mentioned that I should sign up for the End NF Challenge. I told her I’m not a runner so that wouldn’t work, and she said that it wasn’t just for runners. She explained I could keep up with my workout time and use that. The challenge had already started, but I went ahead and signed up. Since starting, I’ve been more motivated and have been shooting for at least 60 minutes of activity every day. During one of my first walks, a family member drove up beside me and asked what I was doing. I told him I was getting minutes of walking in for the End NF Challenge. It is great to feel like I am finally doing my part and getting exercise while doing it. I also get to see what activities others in the challenge are doing through my Strava App and with the NF Endurance team Facebook Group. Every minute counts, and I try to do my part to help us all succeed.
I think the End NF Challenge is great because it brings all kinds of people and activities together. We are one big community working together for one common goal- to End NF! I like that we’re all pulling together. We’re a family.
I believe God has a purpose for all of us. I believe my daughter, Myleigh is and will always be someone who brings people together because I’ve had a front row seat in seeing it already. She is caring and tries to see the good in people. She’s 10 years old, and she’s already inspired more people to help End NF than a whole room of people, including myself, could do in a lifetime.
For more information about the End NF Challenge, visit nfendurance.org/challenge.
