Eye disease afflicts Sapulpa lad Scott Belk
Genetic DisorderNeurofibromatosis affects 1 of every 3,000 u.s. babies
HEATHER WARLICK-MOORE
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Published: July 7, 2009
Scott Belk seemed perfectly healthy when born, except for one thing. His left eye was a bit swollen. But his mother’s obstetrician-gynecologist said that was likely due to his position in the womb before delivery.
Neonatal nurses noticed the swelling didn’t go down and told
Erin Belk to take her son to a pediatric ophthalmologist. Scott soon was diagnosed with congenital glaucoma.
Wanting a second opinion, Belk drove her 2-week-old son from their home in
Sapulpa to
Oklahoma City to visit the
Dean McGee Eye Institute. There, she encountered another mother,
Shannon Renfro, who knew right away what was wrong with Scott. Renfro has since died, but Belk said it was a "God thing” that they were in the same place at the same time that day.
"It’s neurofibromatosis,” Renfro said. She knew because her son suffered from it. There are two types of neurofibromatosis, NF1, or von Recklinghausen NF, is the type Scott has. NF2, or bilateral acoustic NF, is a more rare form characterized by multiple tumors on the cranial and spinal nerves.
MRI scans confirmed Scott’s swollen eye had a tumor on a nerve, the hallmark of NF1.
Scott, now 7, also had several birthmarks over his torso and back. These birthmarks — or "cafe-au-lait” spots — are common in babies, but having more than six can be another indicator of NF1.
Neurofibromatosis is a genetic disorder affecting about one in every 3,000 babies. It’s a progressive disorder that can worsen with age and cause tumors to form on nerves anywhere in the body. These tumors can become cancerous.
"Most tumors in NF1 are not cancer, but there is a 10 percent chance that benign tumors in NF1 can become cancer,” said
Dr. John Slopis, a neuro-oncologist at the
University of Texas M.D. Anderson Cancer Center who specializes in the affliction.
Scott’s tumor was not cancerous but caused his retina to detach. This can cause extreme pain as the eye degenerates, so Scott’s parents opted to have his eye removed.
"He is a very normal child with a very isolated problem localized to one eye,” Slopis said. "My greatest concern is his self-esteem since people pay close attention to one’s face.”
Erin Belk said she is waiting for his prosthetic eye to be made, and Slopis said his health prognosis is excellent.
Belk wants to bring attention to Scott’s case to shed light on neurofibromatosis and how dangerous it can become.
Belk has formed a neurofibromatosis support group with friend and parent
Deanna Inclan.
The support group will meet at 5:30 p.m. Aug. 7 at Mohawk Park, 5701 E 36th St. N in Sapulpa. For more information about the meeting or to contact Belk or Inclan, e-mail
Tulsa NFnetwork@googlegroups.com or call (918) 724-8374.
In Oklahoma City, OU Children’s Physicians Genetics Clinic is a nationally designated clinic treating neurofibromatosis.
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