Neurology Patient Stories

"It was the scariest time of our lives. Going from having a healthy 5 1/2-month-old to a baby that couldn’t even be awake 15 minutes before experiencing a seizure was a very hard time."

Logan was not meeting his developmental milestones as a 1-year-old, and his parents were concerned. Their local pediatrician referred them to University of Iowa Stead Family Children’s Hospital. Abnormalities were found in Logan’s bloodwork, and his family was referred to a pediatric neuromuscular doctor who diagnosed him with Duchenne muscular dystrophy, a rapidly progressive genetic disorder that causes muscles to degenerate and become weak.

Leah was 7 years old and living with her family in Knoxville, Iowa, when she had her first life-threatening seizure. Her parents took her to a local emergency room, and she was flown by helicopter to a Des Moines hospital. Two months later, she had a similar seizure and was again taken to Des Moines. By summer of that year, she was experiencing headaches and intestinal issues.

When Hayden was 19 months old, her parents noticed she was having balance issues. A CT scan at a local hospital showed she had fluid on her brain. She and her family were transferred to University of Iowa Stead Family Children’s Hospital, where doctors discovered a mass on Hayden’s brain stem. The mass was removed during an eight-hour surgery, but Hayden still wasn’t out of the woods.

For years, Myat Haggart’s parents have been searching for answers. Myat, a 10-year-old living in New York City, has been blind since age 5. He also wears bilateral hearing aids to help with hearing loss and has other health issues.

We feel at home, even when we are hospitalized for weeks at a time. Read more about Mya's story.

Hayden was diagnosed with Friedreich’s ataxia (FA), a rare form of muscular dystrophy, in 2012. He wants to help other children with muscular dystrophy by raising money for research. Hayden also serves as an honorary firefighter with the Mason City Fire Department.

Reed was a healthy toddler until he woke from a nap in November 2014 and was unable to bear weight on his right leg. He and his family were referred to UI Stead Family Children's Hospital after several tests at a hospital closer to home were inconclusive.

Nick was diagnosed with Duchenne Muscular Dystrophy, a genetic disorder that causes progressive muscle degeneration and weakness, when he was 4 years old. He and his family worked with the pediatric neurology team to understand what to expect and what challenges lay in front of them.

Aidan first came to UI Stead Family Children's Hospital in 2012 to participate in a research study involving children with juvenile-onset Huntington’s disease, a degenerative hereditary brain disorder that affects muscle coordination and cognitive function. The University of Iowa is a Huntington’s Disease Society of America Center of Excellence, one of only 21 in the United States focused on strengthening the relationship between clinical treatment and research for individuals affected by Huntington’s disease.