University of Iowa Hospitals and Clinics

Ryan's Story

When our son Ryan was born, he was missing the skin on his hands and feet. He had large wounds and his skin blistered at the slightest touch. Ryan was diagnosed with an extremely rare skin disease called Epidermolysis Bullosa (EB), which occurs in only 1 out of every 50,000 children.

Life as we knew it changed in an instant. Our lives became filled with hospitalizations, wound care, pain management, therapies, and a new support system that we found through CHSC. Although Ryan’s diagnosis was new to most professionals we encountered, CHSC staff went above and beyond to educate themselves about EB. They found resources specific to Ryan’s needs, took extra precautions to keep him safe and healthy, and reached out to other service providers to help them learn about Ryan’s diagnosis.

Today Ryan is an amazing 8 year old that lives each day to the fullest! He still endures wound care daily and struggles with EB-related health issues, but he does not let that slow him down. Due to the support and therapies that we receive through CHSC, Ryan no longer relies on his feeding tube for nutrition and learned to walk at the age of 3. Our family also receives respite services through the Health and Disability Waiver. 

Ryan loves watching and playing sports, keeping statistics for his brother’s team, and is a huge fan of the Iowa Hawkeyes and the Kansas City Royals. Ryan was thrilled to be selected as a 2014 Iowa Hawkeye Kid Captain. Words cannot express our gratitude for CHSC.