Research Brings Hope to People Living With Rare Diseases

On December 8, 2017, my wife Ashley delivered our twins, Reynolds, and Campbell. She gets all the credit. I didn’t do any of the heavy lifting. We always knew that Baby A was larger than Baby B, but we didn’t know why. And we had no idea that there were going to be complications at birth. The boys were born at 36 weeks via C-sections, immediately whisked away and taken to the NICU. Reynolds was eventually transferred to another NICU, while Campbell just needed a little more time to grow. So, Reynolds and I left Ashley and Campbell to go to a children’s hospital in Little Rock, Arkansas, where we ultimately spent 103 days in that NICU. He had airway issues. He had cardiac issues. He had GI issues. And throughout that entire time in the NICU, doctors knew that there was some underlying reason causing these issues, but no […]

To read this in Spanish, click here! One day in May of 2022, Sebastian came home sad after school, causing me to worry about his unusual behavior as he is a very happy child. I asked Sebastian if something was wrong and if he was being bullied at school. He assured me he was just unusually exhausted. The following day, Sebastian was in the same down mood, but had a fever this time. I took Sebastian quickly to our local doctor, where he was diagnosed with a stomach bug and prescribed antibiotics. He eventually felt better, but not much time passed before the same symptoms returned. We went to another doctor who gave him the same diagnosis and prescribed more antibiotics. I wondered how it could be a stomach bug if he had no GI symptoms, but I followed the doctor’s advice. Rapid breathing was later added to Sebastian’s symptoms, […]

Madison’s journey with Hemophagocytic Lymphohistiocytosis (HLH) began at 2 months old. A severe ear infection spiraled into Mastoiditis, leading to urgent surgery and a slew of testing. It was a challenging time for her mother, Jeannine, and their family. They grappled with the possibility of HLH, a blood and immune system disorder that had already touched their lives through Madison’s brother. Jeannine recounts, “Madison’s condition was weighing heavy on our minds that she could have HLH like her brother did.” Having sought care for her son at Nemours Children’s Hospital, Delaware, Jeannine turned to the hospital once again, entrusting them with Madison’s care. “We have always felt the doctors and therapists have cared for and loved us truly from their heart,” says Jeannine. “We went to larger hospitals and felt like we were a number there, but not at Nemours.” Madison’s treatment at Nemours Children’s primarily involves outpatient therapy services. […]