Olivia Burgess knows every nook and cranny of Boston Children’s Hospital. The 13-year-old and her parents have traveled from their home in Bermuda to Boston since Olivia was three years old for ongoing treatments for systemic onset juvenile rheumatoid (idiopathic) arthritis and pediatric lupus.
“The unpredictable and severe nature of Olivia’s condition and the frequent travel required for medical treatment can be stressful at times,” says her mother Traci. Olivia sees providers in multiple departments: cardiology, nephrology, pulmonology, dermatology, neurology, gastroenterology and orthopedic surgery.
Drs. Fatma Dedeoglu and Marybeth Son, both in the Boston Children’s Rheumatology Program, are Olivia’s primary providers and serve as home base for her frequent visits. “We have cared for Olivia since she was a toddler. She’s like one of our own children,” says Dedeoglu.
The hospital’s four-legged, furry volunteers and their owners also play important roles in Olivia’s care and help the teen stay positive.
Olivia is an enthusiastic participant in Boston Children’s Pawprints Program — the hospital’s dog visitation service.
“Her face lights up when she talks about dogs. This program can really make a difference for kids who love animals,” says Son.
Pawprints is a perfect diversion for the teen, whose career aspirations run the gamut from veterinarian to animal sanctuary provider to dog groomer.
Olivia meets therapy dogs after her open-heart surgery
Olivia first came to Boston Children’s at age 3, when she was diagnosed with systemic onset juvenile rheumatoid (idiopathic) arthritis, because there are no pediatric rheumatologists in Bermuda.
“Her condition has been difficult to control. She had flares (when her inflammatory symptoms would worsen) off and on,” says Dedeoglu. Olivia traveled to Boston Children’s on an outpatient basis several times a year from age 3 to 10. During this time, Dedeoglu and Son adjusted her oral medications and pursued numerous intravenous therapies, trying to find the right combination to keep Olivia’s symptoms at bay.
At the same time, doctors were screening Olivia for lupus due to a family history of the disease. After she tested positive for lupus, this second chronic rheumatological condition was confirmed in Feb. 2013. The lupus diagnosis was a turning point; Olivia’s immune system began attacking her organs, starting with her heart.
In May 2013, Olivia was rushed by air ambulance from Bermuda to Boston for emergency surgery to repair her damaged aortic valve less than four weeks before her scheduled graduation from primary (elementary) school, something Olivia was very much looking forward to participating in and celebrating with her classmates.
Will Olivia make it home for graduation?
Olivia was determined that she would graduate with her peers, and she missed her dog Shiloh. “They [Child Life Services] brought dogs in to keep me occupied and distracted from the pain,” she recalls. That’s when she met two of her favorite Pawprints dogs — Dayton and Vega.
While the dogs can steal the show at times, the owners play an important role, too, says Traci.
“It takes a special kind of dedication to commit to being a pet therapy volunteer. They have engaged Olivia in conversation, answered her questions about the dogs and provided encouragement for her.”
Luckily for Olivia, Geggel and Emani underestimated her will power. Olivia worked hard through her recovery process, met all of the goals and criteria set by the doctors and therapists, and returned home to Bermuda the day before graduation, where she proudly walked across the stage to receive her school certificate with honors.
Olivia has had a number of other health challenges and lengthy hospital admissions over the past couple of years. The family travels to Boston on a monthly basis for intravenous infusion therapy and more frequent follow-ups with Olivia’s medical team.
Since her open-heart surgery, Olivia has met all of the Pawprints dogs.
“It’s great the dogs are here — not just for me but for other kids. There are so many kids who are here and have it worse than I do,” says Olivia.
“That statement and the sentiment behind it is pure Olivia,” says Son. “She’s very resilient and caring,” adds Dedeoglu.
Learn more about Child Life Services at Boston Children’s.