A variable is defined as “an element, feature or factor that is liable to vary or change.” By their very nature, variables are inconsistent, uncertain and inconclusive. So just imagine what it’s like to be diagnosed with a disorder that has more variables than a sixth-grade science fair. Rather, imagine what it’s like for your newborn to be diagnosed with such a disorder at a time when he clearly can’t tell you what he’s feeling.
It’s a situation local artist Morgan Coven-Herndon knows all too well. At just 10 months old, her son Miles was diagnosed with neurofibromatosis, a set of distinct genetic disorders that cause tumors to grow along various types of nerves anywhere on or in the body. The disorders can affect the development of bones and skin, sometimes even causing disfigurement.
Miles was diagnosed with NF1, which occurs in 1 in 3,000 births — more common than diagnoses of cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined. Though NF1 is the most common mutation of the disorder, its physical presentation can vary widely. It is often characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin and enlargement or deformation of bones. Occasionally, tumors may develop in the brain, on cranial nerves or on the spinal cord.
As a newborn, Miles struggled with sleeping and often seemed to be in pain. An MRI performed at 10 months old revealed an optic nerve glioma on his left eye — essentially a tumor running from his eye to his brain.
Since the tumor was in a sensitive location, and since Miles was still growing, options were limited. The Covens continued to closely monitor the tumor via MRIs and vision tests, and when it began to show signs of aggressive growth, Miles began chemotherapy on the week of his second birthday. He continued chemo off and on for two years. Now, Miles is a quirky, lively 6-year-old and the tumor has been stable for almost two years.
Morgan and her family will continue to monitor the tumor for the foreseeable future, just in case something changes. Whether it will begin growing again or remain stable is uncertain. Again, the variables swing wildly.
“The scale on which each person may suffer varies greatly. For us, the diagnosis of a brain tumor, combined with the ‘watch and see’ mentality was very difficult,” Coven-Herndon says. “Because of his disorder, a tumor can be ‘at home’ in Miles indefinitely. It’s a balance of watching and weighing the risks versus the benefits. Many times, these tumors can grow and intrude on important bodily functions. Other times, they can cause pain. And in more rare cases, they can be cancerous. Then, there are those that just sit there, unnoticed. It’s a wide variety, and that is hard to accept and live with.”
In addition to NF1, there’s the rarer NF2 (1:25,000 births), which is characterized by multiple tumors on the cranial and spinal nerves, by other lesions of the brain and spinal cord and by tumors affecting both of the auditory nerves; and an even rarer form called Schwannomatosis (1:40,000 births), of which little is understood due largely to a lack of cases to study.
In an effort to improve the lives of individuals and families affected by NF and to raise awareness about the disorders, the nonprofit Children’s Tumor Foundation (CTF) was created.
Coven-Herndon was introduced to CTF in an Arkansas Children’s Hospital doctor’s office shortly after Miles was diagnosed. “Lesley Oslica, the CTF Arkansas chapter president, had come to introduce herself and give us a pamphlet about NF and CTF,” Morgan recalls. “She was so positive, caring and relatable — sharing her own story of having a daughter with NF. It helped us know we weren’t alone.”
Fast forward half a decade, and Morgan and Miles are the ones sharing their inspiring journey of perseverance and hope at the Sept. 11 Dancing with Our Stars, a dancing competition, dinner and signature fundraising event for CTF Arkansas.
According to Oslica — who also sits on the board of directors of the CTF national organization — this event is vital to CTF Arkansas because it provides a platform for raising awareness of NF and funds for research, while also helping locals affected by NF and sending NF teens to camp. “Some might not realize the value in raising awareness of a disorder, but in this case, it is still mission-critical because so many have never heard of NF, even though it is the most common genetic condition caused by a single gene,” she says.
Along with Miles, Coven-Herndon has a 10-year-old son, Carter; an 8-year-old son, Tucker; and two stepdaughters, 13-year-old Karaline and 8-year-old Addie Kate. She and husband Eric Herndon are also expecting a baby this December. “Full house!” she laughs. “They are all quite the joyful challenge and are constant reminders of how blessed we are.”
It’s her children, and life in general, that inspire her vibrant artwork. “I love using color to capture a moment,” she says. “I like the combination of a realistic subject matter interacting in some way with abstract drips of paint. Getting lost in the process of creating is such a release from so many things I cannot control or change as a parent of a child with NF.”
Coven-Herndon is donating a custom piece of artwork to be raffled at Dancing With Our Stars, after she and Miles have shared their story with the crowd.
“While she may not realize it personally, Morgan is perfect for this event because she is genuine, strong and devoted, and she is an amazing mother, friend, daughter, wife and community supporter,” Oslica says. “The Children’s Tumor Foundation is honored by Morgan’s generosity and gift of sharing her time, talent and treasure with us.”
A longtime volunteer for CTF, Coven-Herndon says she is happy to speak and share the importance of the foundation and its focus on research. “It gives hope for the future wellbeing of Miles and others like him, as well as the generations to come.”
