Thanks to an experimental treatment for his rare ailment, Reggie is now living the life he always dreamed of.
“You never want to cry in front of your children about a serious situation they are facing,” says Dominique, reflecting on her 16-year-old son, Reggie’s, decade-long medical journey. “They take their cue from you, the parent, and may think it is hopeless.”
Diagnosed with eosinophilic esophagitis (EoE) at age 5, Reggie faced a long list of challenges, including times being confined to bed with severe stomach pains and headaches. He also endured many surgeries over the years—but none of the physical ills caused by his condition troubled the academically inclined boy more than missing school. He was often absent from class, but no matter the challenge, he always kept at his studies.
“Reggie was offered a modified work load through (a disability plan), but he refused it,” says Dominique. “He was determined to do the same work expected of his classmates and viewed the school work I picked up for him—along with science and history books from the library—as his refuge from the chronic pain.”
Eosinophilic esophagitis is a chronic immune disease where a type of white blood cell (eosinophil) builds up in the lining of the esophagus, the tube that connects the mouth and stomach. This buildup, caused by a reaction to foods, allergens or acid reflux, can inflame or injure the esophageal tissue and lead to difficulty swallowing and other eating problems.
EoE is a rare disease and, in fact, has only been recognized in the past two decades.
Reggie’s physicians in New York, where the family lived at the time of his diagnosis, came close to putting him on a tube-feeding regimen after a course of food elimination therapy and an exclusive formula-based diet failed to reveal any pattern in the production of eosinophils.
“There was no way to predict if and when the symptoms would flare up, and so Reggie missed a great deal of school, especially during the fifth and sixth grades,” recalls Dominique.
By Reggie’s middle-school years, the family had relocated to Chapel Hill, N.C., where Reggie established a new care team, which included pediatric allergist, Brian Vickery, MD, and gastroenterologist Martin Ulshen, MD.
“When I first met Reggie, he not only had EoE but multiple food allergies that can cause anaphylaxis; he also has significant asthma and environmental allergies,” says Dr. Vickery, a member of UNC’s Division of Pediatric Allergy, Immunology, and Rheumatology. “Although I was prepared to try, I wasn’t sure how much improvement we would be able to make in his condition—and when I say ’we,’ I mean the entire team that took care of Reg. EoE can be notoriously difficult to treat, and there is very poor understanding of many aspects of the disease.”
The care team placed Reggie on an experimental regimen which included oral medications and a schedule of regular allergy shots. Over time, Reggie’s parents noticed significant changes in his health. He missed less and less school and was actually able to join an academic club focused on his true passion: science.
“By 2011, there was a lot of improvement, and Reg began participating in regional competitions with (his middle school’s) Science Olympiad team,” she says. “He won several awards at regional and state competitions.”
Reggie enjoyed the experience so much, he looked into applying to the N.C. School of Science and Mathematics. When he learned he would have had to wait until 10th grade to attend the school, he began researching boarding schools well-known for their rigorous academic programs. He ultimately applied for admission to Phillips Exeter Academy, a private college prep school in New Hampshire.
When Reggie was accepted for admission in 2013, the tears Dominique shed were tears of pride—and she had no qualms about Reggie seeing her cry. And she wasn’t the only one proud of how far the young man had come since his diagnosis.
“I remember this preternaturally calm, rail-thin middle-school student reading books of Greek mythology while waiting in the clinic and being so impressed with his resilience and determination,” reflects Dr. Vickery. “I would not have predicted at the time we met that he would be where he is now. With Reg, the sky is the limit, and I have no doubt he will go on to achieve great things.”
At Exeter, Reggie continues to pursue his love of science. His goal is to be admitted to a school like Stanford or Harvard and eventually start a career in the neurosciences. Upcoming summer plans include a potential lab internship or attending a leadership program in South Africa.
“It may sound like a lot of work, but it’s not work; it’s fun!” says Reggie of his life at boarding school.
Dominique and husband, Bobby, credit Reggie’s care team for getting his life back on track.
“Doctors in Boston and New Hampshire constantly marvel at the extraordinary team effort it took to bring Reggie to boarding school,” says Dominique. “It really does take a village to raise a child.”
“Oh, I’m feeling great—physically I have no symptoms and haven’t had a headache in a while,” adds Reggie. “I’m definitely on top; the illness isn’t an issue any longer.”
“Our experience at UNC Children’s has exceeded our expectations, because Reggie is more than just a number there,” she adds. “It’s frightening to see one’s child suffering and feeling helpless. But Drs. Vickery and Ulshen promised they would help Reggie, and they did—much more than we ever could have imagined.”