In early 2021, amid the pandemic, our son Brody, who you may know has always had a big appetite and love for food, started to vomit after meals. We couldn’t figure out any clear triggers, so we brought him to the pediatrician who assured us it was “probably nothing,” but helped us move up our first appointment with a gastroenterologist. A few days later, we got concerning blood work back showing dangerously low hemoglobin and protein levels, and Brody had his first endoscopy and colonoscopy later that week. By mid-March he received a provisional diagnosis of Eosinophilic Gastritis (EG), a rare disease of the stomach. In EG, a type of white blood cell, called eosinophils, gathers in large numbers in the stomach, causing injury and irritation to the stomach. While our family breathed a deep sigh of relief having a diagnosis and learning that eosinophilic disorders are not life-threatening, over the past 14 months, our family has learned just how life-impacting this disease can be. From doctor’s appointments, blood pokes, additional diagnostic tests, 3 more endoscopies, 13 months and counting on a very limited food elimination diet, steroid therapy and other medication, we have repeatedly been told about the paucity of research to guide intervention for this chronic disease. We have been fortunate to get connected to a great team of doctors, and feel lucky to have such a wonderful support team to help guide next steps and provide emotional support when we need it. Nonetheless, we hope for a day when Brody can live without the impact of EG. In order to get there, we hope you will consider supporting us in raising funds for research.
Eosinophilic Family Coalition is raising funds to support Eosinophilic Research at Cincnnati Center for Eosinophilic Disorders (CCED) and to support programming of Camp CouragEOS. The Cincinnati Center for Eosinophilic Disorders partners with Eosinophilic Family Coalition to provide a camp designed specifically for families living with Eosinophilic Disorders. It is a weekend of fun, education, self-esteem buildiing and sharing with those that have similar experiences. The camp is held at Camp Joy Outdoor Education Center.
Give today to support the continued need for Research to advance understanding, improved diagnostics, and better treatments for these difficult to understand diseases. Imagine a life without food, medical formulas, feeding tubes, and decreased quality of life. The opportunity to give to the CCED to support Research and a Camp that brings joy to families who would otherwise not be able to attend traditional camp, is a once in a lifetime experience.
Thank you for considering a donation to the Eosinophilic Family Coalition during National Eosinophil Awareness Week!
Lindsey, Jacob, Brody and Ryan
