Defying the odds with courage and hope
In 2006, Stephanie and Royce Keller welcomed their first child into the world: Royce Lee Keller II, who today is 12 years old.
From the beginning, their bundle of joy struggled to eat. Severe vomiting and dehydration were a constant worry. Four months later, he was hospitalized for what they were told was a viral infection. The infant’s health quickly declined, requiring oxygen and pain medication for days. He was discharged once he kept fluids down.
At 18 months old, her son’s stool was unusual, and Stephanie consulted his pediatrician, who sent her to the E.R. in an abundance of caution.
While in the waiting room, Royce passed out in his mother’s arms multiple times. Each time he grabbed his stomach, screamed, and then became unconscious. She frantically called for help, but it wasn’t until hours later that a radiologist saw the fainting Stephanie had been describing, validating her concern. However, an ultrasound showed nothing and the hospital wanted to release Royce.
Stephanie was so against taking him home that she called her pediatrician from the E.R., who ordered Royce be admitted overnight for observation. Blood work the next morning showed a serious internal bleed. Immediate surgery cauterized the bleed in his small intestines. If Royce had been discharged the day before, he would have died at home.
Finding an advocate
Since the internal bleed, Royce has been under the care of a gastroenterologist, who focuses on treating Royce for acid reflux and ulcers.
Royce was 8 years old when his specialist suggested he should be tested for eosinophilic esophagitis (EoE), a rare disorder affecting 1 in 1,500 children in America. Everyone has eosinophils, a type of white blood cell that aids in the digestion of food. EoE occurs when the body produces too many eosinophils, which attack the digestive tract, making it difficult to swallow—a problem Royce has had since birth.
Royce underwent an endoscopy that showed severe damage to his esophagus caused by eosinophils that measured in the 40 range, compared to a healthy person whose levels typically show up as zero. Diet and medication provided some relief, but flare-ups continued to put Royce in the hospital.
Yet the pain continues
“Have you ever heard of Munchausen by proxy?” a doctor asked Stephanie as she tried to hand over release papers with Royce screaming in pain. She was well aware the doctor was accusing her of fabricating or causing her son’s illness. In shock, Stephanie told her, “Get out of the room!”
“I take it you know what that is,” the doctor replied.
“I take it you don’t know I work for child protective services,” Stephanie shot back. “If you ever accuse me of making my child sick, you better have proof or be prepared for a lawsuit.”
Even after being insulted, she was still reluctant to take her son home in his current state. A quick consult with the gastroenterologist validated Stephanie’s concern. “You have to trust me,” he said. “I see something bad coming. Royce needs to stay in the hospital.”
The next morning, Royce was in adrenal crisis. His body was not creating enough cortisol, a hormone produced by the adrenal glands. An endocrinologist explained this could be life-threatening. If they had left the hospital the previous day, Royce could have died. This was the second time Stephanie’s intuition and their proactive gastroenterologist saved her son.
A new medical challenge
Around age 8, Royce’s father pointed out that his feet and ankles turned inward. After observing his unusual gait for days, Stephanie mentioned it at his next doctor’s visit. He referred Royce to an orthopedist, mentioning that she should research Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder.
“Can you do stuff with your feet that grosses out your friends?” It seems like an odd question for a doctor to ask, but when the orthopedist asked Royce, he exuded a big grin. His parents silently gasped as Royce flipped his foot all the way around, 360 degrees. That alone told the orthopedist Royce fit the profile for having EDS.
A geneticist confirmed the diagnosis of hypermobility EDS, one of the 13 types of EDS. Symptoms include stretchy, almost elastic skin that bruises easily; chronic musculoskeletal pain; and hypermobile joints, such as elbows, knees, fingers, toes and ankles that are prone to dislocation.
Roadblocks to receiving proper care
Royce requires leg braces and often needs a wheelchair—that he proudly maneuvers without needing any help. Due to insurance-imposed limits, Royce receives physical therapy once a week (instead of the prescribed twice a week) and has been denied occupational therapy. He has been issued a handicapped placard for their car, but social security disability benefits have been denied.
Overcoming the depths of despair
Royce has never known a life without pain. He admits, “I can’t run. I can’t go to school. I have meds. I have to wear boots or use my chair to get around. It’s always there. It hurts in all different ways; sometimes it hurts my body worse when I’m upset or angry.”
The isolation of living with a chronic disease is a big burden to carry. Painfully, his mother recalls when Royce let the floodgates of his emotions open. “I’m just tired. I’m by myself. Nobody understands this. My doctors don’t believe me most of the time and I hurt all the time.” At the age of 11, Royce was having suicidal ideations, a heartbreaking truth for any parent to hear.
Team of caregivers
Abigail and Kaiden, Royce’s twin sisters, are three years younger. They are very aware of Royce’s conditions. When he’s hospitalized, they constantly worry about him to the point where it affects their schooling. Royce’s grandparents, Namaw and Papaw, live with them to help in whatever way they can.
Stephanie and her husband are now divorced, but they actively co-parent for the sake of their children, alternating who stays overnight with Royce when he is in the hospital.
You are not alone
Months after Royce discussed thoughts of suicide, he attended “Pediatric Pain Family Week,” sponsored by The Center for Courageous Kids. Royce was self-conscious about using his leg braces or wheelchair. But within minutes of entering camp, he met a girl his age who was very open about her conditions in a way that showed Royce he didn’t have to hide who he was.
With each new interaction, he discovered there were other kids like him. This was a turning point for Royce. The camp has given Royce and his mom a year-round support system.
Royce is a soft-spoken, well-mannered kid from Texas who has spent more time in the hospital than in a classroom. Through the support of his family, friends from camp, and a relentless gastroenterologist, Royce soldiers on to battle his pain.
He uses relaxation techniques, and distraction therapy by listening to music and comedy. Royce is a competitive swimmer and says his pain is less severe when he’s in the pool. He loves to draw comic books and sharks. His affinity for the water has inspired him to become a marine biologist when he grows up. There is no doubt that Royce Keller can achieve any goal he sets.
Center for Courageous Kids: courageouskids.org
Texas Children’s Hospital: texaschildrens.org
Dysautonomia International: dysautonomiainternational.org
Ehlers-Danlos Society: ehlers-danlos.com