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Q&A: NF Mom Kristy Stewart on the End NF Car Hitting the Road in Kentucky

By August 22, 2017February 28th, 2024Awareness, NF1, Story of NF

On August 10, 2017, the 65th Annual NIBROC Parade in Corbin, Kentucky featured the debut of a very special car driven by Wallen’s Towing & Recovery, a local Corbin automotive company. The parade is part of a three day festival that includes activities for all age groups and interests.

Wallen’s Towing & Recovery wrapped a company vehicle in blue and green, featuring the Children’s Tumor foundation logo, the I Know a Fighter mark, the End NF badge, and a very special photo of a local NF Hero, Austin Stewart. We asked Austin’s mom Kristy to tell us more about the car, the community and her NF Hero.

CTF: Tell us about the parade and how this all come together?
Kristy: A close family friend, Daniel Wallen, owns a towing company, Wallen’s Towing, in our small town. They are very community oriented, and they felt very helpless in Austin’s fight against NF. The idea for the NF wrap car came about as a way to raise awareness for NF and to also help local NF families. Daniel, Danielle, Haley, Dylan, and the entire Wallen family are great about showing support in the community and especially to our little family! The NF car was introduced to our small town during our hometown parade at the annual NIBROC Festival.

Where does the car go next?
The car will be used for lockout services, business errands, transporting clients who have been involved in accidents, and other miscellaneous needs of Wallen’s Towing. For every mile the car drives, Wallen’s will donate 25 cents/mile and at the end of the quarter that money will be donated to a local NF family.

What did this mean to your family and your son? 
Austin’s journey with NF has been nothing short of a roller coaster ride; ups, downs, loops, and curves that have made our family hold on tight for the ride. In those trying times when the news from the doctors isn’t great or when treatments aren’t working like they should, support from our friends, family, co-workers, and church enable us to stay strong and keep trudging on.

This car encompasses all of the things that are dear to us as a family fighting NF together. It embodies hope that we will one day find a cure, the strength and love that we need to keep fighting, the ability to educate others about NF, and the faith that by working together we will one day not only have treatment options but a cure. It completely humbles us that Wallen’s Towing went above and beyond to not only find a way to raise awareness but to also help local NF families.

Tell us about your family and your NF Hero
Austin is our second child. He came into our lives when his big sister, Kalley Faye, was only three years old. Austin was born a healthy, perfect baby boy. However, after bringing him home from the hospital, we started noticing birth mark-looking spots all over his body. At his two month checkup the appearance of the numerous café au lait spots prompted our local pediatrician to send him to a geneticist at Cincinnati Children’s Hospital for genetic testing. We were astonished to learn that Austin had neurofibromatosis type 1, as no one else in our family had been diagnosed. Austin’s NF was the result of a spontaneous mutation that occurred at conception and even though Austin was the only one diagnosed with the disorder, it felt as if the whole family was diagnosed, as it affected and continues to affect us all.

Austin had different issues throughout infancy. The biggest issue he faced was his inconsolable crying. He cried for at least 6-8 hours a day and nothing that we tried seemed to help the situation. His geneticist referred him to a gastroenterologist where he was diagnosed with severe acid reflux and we learned through an upper endoscopy that his esophagus was in bad shape. We later learned that he also had eosinophilic colitis and eosinophilic esophagitis. Medicine was prescribed and we were told that this should take care of the irritability, crying and pain. However, we didn’t see huge changes to Austin’s behavior. Crying, irritability, pain, and sleepless nights were becoming a normal part of our everyday existence.

At almost three years old Austin, who was completely potty trained, started having issues with bladder control. We were also still struggling with crying, pain, and irritability. He also started refusing to bear weight on his right foot and leg. This prompted an MRI of his spine and pelvis. In September 2015, Austin was diagnosed with a plexiform tumor on his right sciatic nerve and we finally knew the culprit of his pain. Unfortunately, because of the position and location of the tumor it was deemed inoperable. The neurosurgeon and orthopedic specialist detailed a grim outline in the future of this diagnosis: he would face pain, leg discrepancies, surgeries, and if the tumor continues to grow, he will lose his ability to use his right leg. The sad and most heart wrenching thing was there was nothing we could do about it. No treatment options, no magic medicine, no surgery…..he will just have to face whatever NF decides to bring his way.

Fortunately, we met with the oncologist the following week and found that there was a clinical trial beginning of which Austin was a candidate. He would have to learn to swallow pills, would have eating and drinking restrictions, have monthly appointments at Cincinnati Children’s Hospital (three hours from our home), and scans every four months that require him to be under anesthesia. This trial was the most promising option, so of course we were ecstatic that Austin was going to be a part of it.

Austin has been on the MEK trial now for 15 months and while his main tumor hasn’t responded the way we would’ve liked, we are hopeful that in the future more treatment options will be available.

Austin is definitely our hero; he is full of life, full of personality, and he faces the adversity of NF with a little grin on his face as if to say, “NF may knock me down but it will never keep me down!” We are so blessed that God chose us to be Austin’s parents and while we do not understand why we he put us on this NF journey, we will fight right along with Austin until a cure is found and no other child or person has to endure this horrible disorder!

Is there anything else you’d like to add?
We are blessed to have so many people who care about our NF Hero. A huge thank you to Daniel, Danielle, Haley, Dylan, and the rest of Wallen’s Towing for coming up and following through with such an amazing idea. A big thank you to Darrell Baker at 4-Ever Graphics for doing such an amazing job on the car.

Watch this news report from eastern Kentucky news station WYMT-TV Corbin business drives for a cause for more!