My name is Christina Shreeve, and our family lives in Tampa, Florida. My son, Gavin, is 12 years old, and he was diagnosed with Crohn's disease at just five. For almost six years now, he has been navigating life with this disease. Receiving that diagnosis was overwhelming—it completely changed our lives.
Gavin started showing symptoms early on in life. Years of seeing specialists and countless tests and imaging only led to more questions. Our local team applied to the Undiagnosed Disease Network, and Gavin was soon accepted. During our stay at Duke University Hospital, a genetic test revealed a tiny mutation on the NLRP3 gene that was causing uncontrolled systemic inflammation.
Gavin was then sent to the rheumatology department at the National Institute of Health at age 4 for research to determine an appropriate treatment. During the next year, we tried a few biologic and chemo treatments, but nothing was working. The uncontrolled inflammation triggered autoimmune conditions. He was diagnosed with Autoimmune Hepatitis & Crohn's Disease. We were heartbroken.
A tailored treatment plan was developed, and after several adjustments, Gavin finally reached remission with a combination of IV Remicade and Methotrexate every four weeks. He was thriving, enjoying childhood—until we hit a devastating shortage. It was incredibly frustrating because it’s already hard to achieve remission with Crohn’s, and once you find a combination that works, you want to stick with it.
I shared our frustration on social media when I heard about the shortage. This simple act of sharing our experience led to a life-changing connection. Thankfully, two friends immediately introduced me to Laura Bray and her organization, Angels for Change. I contacted Laura, and she responded the very same day.
Laura has been a guiding light for our family. She helped us navigate another shortage Gavin faced shortly afterward, and thanks to her advocacy, we found an alternative medication that’s working well for him right now. But if things change, I know that Laura and Angels for Change will be there to fight alongside us to get Gavin the medicine he needs.
Angels for Change is making a real difference for families like ours. You never know when you or someone you love will face a diagnosis, only to be told the necessary medication is unavailable. No one should have to go through the fear of not being able to access life-saving medication for their loved one. If you ever find yourself in this situation, reach out to Laura and Angels for Change.
