I am supporting the Courage Classic for kids just like me!
Hi there, my name is Sofia and I am a current patient ambassador for Children's Hospital Colorado.
My journey at Children's started in 2022 when I was rushed to Children's. My heart rate was falling into the 30s, my liver was failing, and I had become so malnourished that I completely fell off my growth curve. I was put on 24/7 feeds and was in the hospital for a week and a half. While I was admitted my family and I could put all the puzzle pieces together.
I was diagnosed with a rare gastrointestinal disease called Gastroparesis which means that my stomach is partially paralyzed, I was diagnosed with a circulatory disorder called POTS and migraines. I later on came to find out that all of my issues were caused by an extremely rare connective tissue disorder called Ehlers-Danlos Syndrome. I was sent to so many different specialists including neurology, cardiology, gastroenterology, and the Pain Clinic. I spent countless hours in and out of the hospital for procedures, tests, etc. Children's became my second home.
The Pain Clinic is very near and dear to my heart and they have helped me not only overcome the pain but use my pain for good, my pain has a purpose and that's to help other kids like me. I wouldn't be here today without Children's, they saved my life and are continuing to save my life. The pain clinic staff is exceptional and they take care of the whole child not just their diagnosis. They got to know me and my goals and they know my family and they are just there whenever you need them.
I ride because research is the only hope for kids like me with such rare diseases and Children's is leading the country in multidisciplinary care and innovations for kids like me. I am extremely grateful to have this hospital right in my backyard.