University of Iowa Hospitals and Clinics

Family Stories

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...

Madison's Story

Our youngest daughter, Madison, was born with a partial trisomy 13 chromosome which has led to multiple health needs. Being able to utilize telehealth at our local CHSC regional center enables me to provide a more normal life for my other children and eliminate hours of travel to appointments from our home in Ottumwa. One of Maddie's main medical complications is feeding. She is currently 100% G-tube fed, which is somewhat of an oddity in southeastern Iowa. The staff at CHSC make me feel heard and supported, encourage me as a mom, and are very empathetic to the many ways our family's lives...

Colter's Story

At age 18, our son Colter was looking forward to starting his first day of college. Colter has attention deficit hyperactivity disorder and autism. During his high school years, he had some issues with executive functioning skills, interpersonal communication, and self-advocacy. But with the help of an Individualized Education Program (IEP) and 504 Plan, Colter successfully attended and graduated from a private, parochial high school. In planning for our son’s transition to college, we took a tour of campus before classes started and Colter was assigned a tutor. After the first few weeks of...

Amy's Story

Our daughter Amy was diagnosed with autism spectrum disorder, attention deficit disorder, and mild intellectual disability shortly before her junior year in high school. This came at a time when we just wanted to think about Amy’s life after high school and developing a “roadmap” for her to follow into her adult life. We were referred to Child Health Specialty Clinics and met with Family Navigator, Kathy. She reviewed available transition resources with us including REACH, Project SEARCH, and the ACCESS Program, and helped us apply for a waiver for Amy to receive supported community living...

Carver's Story

When our son Carver was born, there were some complications. The umbilical cord was wrapped around him, and at one point, he was without oxygen and a heartbeat. The doctors didn’t know what the future held for Carver, but they also didn’t know what a fighter he was. After 10 days in the NICU we were able to take our healthy and beautiful baby boy home. At first, Carver was a typical baby, but as time went on we noticed that his legs “looked funny” and he wasn’t reaching physical milestones. After several doctor visits, Carver was diagnosed with Spastic Diplegic Cerebral Palsy, a condition...