If you know the Condax family, you likely know the story of our son, Peter. When you have a child who’s sick, it becomes part of who you are—it takes over a piece of your identity. As every parent knows, children run your life. A sick child is your life.
When Peter was 10 months old, he got sick very suddenly. We initially thought it was a typical bug or virus but quickly realized it was something more serious. We are fortunate to live near excellent hospitals (three of the best children’s hospitals are within two hours of our home). Just before Christmas 2018, we drove from Bel Air to Baltimore in the middle of the night with a very sick child. Peter was quickly admitted with swollen lips and a high fever. The doctors spent the next several days running tests, trying desperately to figure out what was happening, all while Peter health continued to decline.
On Christmas Day, Peter had a massive GI bleed. We were rushed to the PICU, where what felt like hundreds of doctors worked on him—placing lines, making rounds, and trying to save him. At one point, he had no blood pressure. Our child was dying in front of us. We were taken out of the room and placed in a conference room where we waited for hours, literally all day, while the doctors worked on him. Peter was eventually moved to the OR, where a GI team performed an endoscopy and managed to stop the bleeding. I was certain he wasn’t going to make it, but he did.
Hospitals are a rollercoaster—highs and lows, adrenaline spikes, and crashes. When the team came in and said he was stable, I felt a relief I will never forget. He was placed in a medically induced coma to stabilize while the team continued working to diagnose him. The whole time, the medical team suspected Kawasaki disease, a rheumatological disorder. However, Hopkins had just lost their only pediatric rheumatologist. Our medical team coordinated remotely with pediatric rheumatologists at other hospitals, and Peter was treated with three rounds of IVIG (a biological agent and pooled antibody used to treat a range of conditions, including Kawasaki). After more than three weeks in the hospital, he was stable enough to go home, though without a definitive diagnosis. He was discharged with the tentative diagnosis of atypical-atypical Kawasaki.
After discharge, we transitioned Peter’s care to the pediatric rheumatology department at CHOP, where he was diagnosed with Familial Mediterranean Fever (FMF) through genetic testing. The doctor there oversaw his care for the next few years. Flash forward to 2022: Johns Hopkins once again had a pediatric rheumatologist on staff, so we moved Peter’s care back to JHCH. Dr. Shalen has changed our lives. For the first time in five years, we feel like we have answers for why Peter is sick and how to treat him. Dr. Shalen has spent the last two years observing Peter, developing both short- and long-term treatment plans, and working closely with our pediatrician to monitor and care for all of Peter, not just the FMF.
We know the value of the Pediatric Rheumatology Department at Johns Hopkins. The hospital saved Peter’s life in 2018, and the Rheumatology Department and Dr. Shalen are ensuring he (and we) have the best care and highest quality of life possible now. The change over the last two years has been remarkable, all thanks to JHCH.
I hope you’ll consider supporting Peter, the Condax family, and Johns Hopkins Rheumatology on September 21st for the Johns Hopkins Children’s Center Miracles in Motion 5k. Peter truly is our Miracle in Motion.
