At 14 months old, Lily Lee still wasn’t walking. As she began to grow weaker, tests at her local hospital showed nothing unusual. After being referred to University of Iowa Health Care Stead Family Children’s Hospital, Lily was diagnosed with spinal muscular atrophy, a rare genetic disease that causes muscles to weaken over time.
At the time, no treatment was available. Ten months after her diagnosis, the first therapy for the condition was approved, and Lily received her first shot shortly afterward. She continues treatment through a lumbar puncture every four months to help slow the progression of the disease. She also takes part in a clinical research study that includes monthly infusions designed to help build muscle.
Now 12 years old and in seventh grade, the Fort Dodge girl enjoys riding her handcycle bike, spending time with friends at school, and swimming. She hopes to become a cosmetologist someday.
Lily’s story is being recognized through the Kid Captain program, a partnership between University of Iowa Health Care Stead Family Children’s Hospital and the Iowa Hawkeyes. Now in its 17th year, the program honors pediatric patients and celebrates their health care journeys and inspirational stories.
Lily will be honored as part of the Kid Captain program during Iowa’s game against Michigan on September 26.
For more information about the Kid Captain program, visit uichildrens.org/kid-captain .
Source: University of Iowa Health Care Stead Family Children’s Hospital
