For the first year of her life, Ada, 6, was healthy and hit her milestones with ease. Soon after she turned 1, a wave of illnesses overwhelmed her. While most children recover from respiratory infections without complications, the combination of adenovirus, respiratory syncytial virus (RSV) and bacterial superinfection proved too much to handle for little Ada. That winter would mark the beginning of her breathing troubles, as she faced one walking pneumonia after another. 

On the surface, Ada seemed to have asthma. While a logical conclusion given her primary symptoms, there were some signs that were not so typical, warranting a deeper investigation. For that, Ada’s primary care physician referred her to Children’s Hospital of Philadelphia (CHOP). There, a second chest CT scan confirmed prior suspicions: interstitial lung disease. Though it’s very rare, Ada’s previous respiratory infection had caused permanent damage to her lungs. 

Finding joy in the journey 

Fortunately for Ada, her condition – classified as post-infectious bronchiolitis obliterans – has remained stable and her lungs continue to develop along with her growing curiosity. Horseback riding, as part of her current therapy, not only satisfies that craving, but it also helps build the strength she needs to play with friends and swing on the monkey bars. Ada, not surprisingly, has also taken an interest in medicine and anatomy. The doctors, nurses and other staff she has met at CHOP all serve as her role models.  

Breathing life into every day 

Because Ada was born with a caved-in chest and flared ribs (pectus excavatum), breathing deeply doesn’t come easily. Physical therapy (PT) visits with CHOP have taught Ada how to adapt and keep her airways clear, even with her condition. She continues to receive regular PT close to home. By strengthening her core muscles, she can better expand her chest to take fuller breaths. Each session brings progress, bringing Ada one step closer to acing her breathing tests. 

Turning tests into triumphs 

Pulmonary function testing gives Ada and Anna, her mom, something to look forward to: the results. Not only do they get to check in with Ada’s pulmonologist, Lisa R. Young, MD, but they also get to see Ada’s lung growth at every visit. Plus, it’s an opportunity for Anna to meet with Social Work and get assistance with accommodations for Ada, like her 504 plan (Americans with Disabilities Act), which ensures Ada gets the support she needs to thrive at school, from academics to extracurriculars.  

Fueling the fight  

Every breath Ada takes is hard-earned, burning more calories than most kids her age. To help her keep up, Anna collaborates with Ada’s nutritionist to ensure she is following a normal growth curve. On top of that, CHOP’s team expertly coordinates Ada’s appointments – physical therapy, nutrition and social work – all within a single visit so they only need to make one trip. For Anna, who has juggled hospital visits at other facilities, this seamless approach is nothing short of life-changing. 

A network of care 

Anna has seen her share of hospitals, but CHOP stands out. “I’ve never seen anything like it,” she says. From scheduling back-to-back appointments to securing insurance coverage for essential medications, CHOP’s team goes above and beyond – not just for Ada, but for Anna too. With support from CHOP, the responsibility of managing Ada’s care has become less of a “full-time job.” That also leaves more time for Ada to focus on her art projects – her favorite next to horseback riding. 

“CHOP didn’t just support Ada; they also supported me,” Anna shares. Because when a child faces challenges, their caregiver does too. Together, Ada and Anna are proving that, with the right circle of support, even the smallest victories, like a single breath, can feel monumental.