Neurology Patient Stories

Born at 24 weeks gestation at 1 pound, our daughter Molly was diagnosed with intractable epilepsy when she was 2 1/2 years old.

"UI Stead Family Children’s Hospital helped save Grayson’s life. Without their expertise, Grayson could’ve had a very different outcome." Sara Erbes

Cien was not meeting his developmental milestones in his first few months of life. One evening, he suddenly had a seizure, which led him to be hospitalized in a Des Moines hospital for a month. When his seizures continued to worsen, he was transported by AirCare to University of Iowa Stead Family Children’s Hospital, where pediatric neurologists diagnosed him with agenesis of corpus callosum (ACC) – a rare disorder where the middle of the brain does not fully form.

Enzo was a healthy toddler until he fell ill at 21 months old. A cold led to weeks of unexplained seizures and worsening health. He spent two weeks in his local hospital, and when he became unresponsive, he was transferred by helicopter to University of Iowa Stead Family Children’s Hospital. Pediatric neuromuscular specialists diagnosed Enzo with a rare disease, discovered in 2007, called anti-NMDA receptor encephalitis – a disease where the immune system attacks the brain – and began extensive treatment.

"For a mom with a child that has multiple special needs and multiple medications it’s one less thing that I have to worry about."

When Mason was 6 months old, his parents noticed he wasn’t reaching certain milestones such as sitting up on his own or trying to crawl. When he was 1 year old, he woke up from a nap and unexpectedly had a 13-minute seizure.

Livia was referred to University of Iowa Stead Family Children’s Hospital by her local doctor at age 5 after being diagnosed with cyclic vomiting syndrome—a condition marked by episodes of severe vomiting and nausea.

After noticing that she crawled, rather than walked, up the stairs at age 3, Kiersten was referred to University of Iowa Stead Family Children’s Hospital. A pediatric neuromuscular expert diagnosed her with limb-girdle muscular dystrophy, a form of muscular dystrophy that weakens the muscles in the arms and legs.