Virginia’s Story

My name is Virginia and I have indeterminate colitis (IC). I enjoy spending my time playing outside, cooking, baking, anything with music, or just hanging with my friends and family. Sometimes these activities are harder to do because of my IC but I never let it keep me down.

My IBD story officially started when I was diagnosed at 3. Like others with IBD, getting to that diagnosis was a long, hard road. When I was just an infant, I had multiple febrile seizures which lead to my diagnosis of SCN1A gene mutation. This began my medical journey which led to a lot of special doctors who helped me get to where I am today…a strong, brave 9-year-old. With all my health conditions I have faced some learning delays and sometimes I struggle to communicate my needs and wants, including any pain I have.

My very supportive family dug in to create my own little army, “Team Virginia.” They worked to educate themselves on my medical conditions, so I had – and always will have – an amazing support system. With them at my side, I feel comfortable to share my story with you.

Shortly after my 3rd birthday, I had a really scary hospitalization after some of my seizure medications were changed. I was in the hospital for 2 weeks trying to get to the bottom of my symptoms: extreme fatigue, frequent loose stool, and little to no appetite – only to mention a few. My mom had discussed my bowel concerns with my doctors, but it was this hospitalization that tipped the scales. Seven months after being in the hospital I met my GI specialists…shout out to Dr. Trauernicht and Boys Town Pediatric GI team. Within 2 months, I received my IC diagnosis and immediately started my customized treatment plan. It started with the oral medications, but I had a bad reaction to the steroids and weeks later I was started on my infusion treatment.

Currently I get my infusions every 7 weeks, and my last scope and labs showed I was in remission. Team Virginia wants to thank my care team and doctors for their work to make sure that all my treatment plans are cohesive and are adjusted to my needs as a growing girl. Without organizations like Crohn’s and Colitis Foundation my story might have taken a different journey. The Foundation provides a place not only for patients, but their family and others to gain access to nearly limitless resources. I am honored to be the 2022 Honored Hero and represent the Crohn’s & Colitis Foundation at Omaha Take Steps. I excitedly look to the future where we can have a cure for IBD. Thank you for supporting the Crohn’s & Colitis Foundation and their very important mission.