Cycle for hope
Cycle of Hope is a team composed of patients, family, friends, and CHCO staff and was created by Children's Hospital Colorado patient ambassador, Sofia.
At 16, Sofia was rushed to Children's Hospital Colorado after her heart rate was falling into the 30s and her liver was starting to fail due to malnutrition. While inpatient, Sofia was diagnosed with gastroparesis which is a paralyzed stomach, a blood circulation disorder called POTS, and a migraine disorder. Due to these conditions, Sofia suffers from 24/7 pain which was severely impacting her ability to function and go to school like a normal teenager. That's when Sofia's neurologist told us that we needed to be seen by a geneticist to be tested for what she suspected was a genetic disorder. So after speaking with a geneticist, Sofia was diagnosed with a rare connective disorder called Hypermobile Ehlers-Danlos Syndrome which affects every major organ system in her body. Although there is no cure for what Sofia has, we are incredibly lucky to have one of the only multidisciplinary pediatric chronic pain clinics in the country.
Cycle of Hope is honored to have the possibility of dedicating their funds to the amazing staff who work in this clinic. This clinic has become home to many families like ours. This clinic has the most compassionate people like Nurse Paul who called on his day off to check on Sofia or Sheryl Kent who always took Sofia under her wing and always reminded her that she could do hard things. People like that are what made a major difference in Sofia's care. The entire team came together to help Sofia mitigate her symptoms and cope with the medical trauma she faced.
Now Sofia is attending Regis University and is pursuing a career as a pediatric nurse practitioner so she can help other kids navigate a world with chronic pain. Sofia is also very fortunate to be serving as a patient ambassador for the hospital.
The Courage Classic is an opportunity to support positive outcomes and give hope to better treatment options for kids like Sofia! Join us in making that a reality!
