Neurology Patient Stories

Quinn was born with a genetic disease so rare that it doesn’t have a name. A gene mutation, known as SPATA5, has resulted in various medical conditions, including epilepsy, blindness, hearing loss, dystonia, and opisthotonos, a condition which causes severe and rigid muscle spasms that result in backward arching of her head, neck, and spine. When strong medications, up to 15 at a time, began negatively impacting her organs, pediatric neurosurgeons implanted a baclofen pump directly into the ventricles of her brain to more directly deliver her medication. She is now able to lie down comfortably and stand, and she is learning to take steps where before she would have been arching in pain.

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.

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.

"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.