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.
In February 2014, Ean fell asleep and began vomiting. Unresponsive and not breathing, his parents called 911, and Ean was rushed to the emergency room by ambulance. After testing, pediatric neurologists at University of Iowa Stead Family Children’s Hospital determined he was having seizures caused by epilepsy.
When Gabe’s mother was 20 weeks pregnant, doctors at their local hospital discovered Gabe would be born with a congenital heart defect called double-inlet left ventricle. Knowing he would need a series of three open-heart surgeries by the time he was 5 years old, his parents decided they wanted Gabe to be born in Iowa City and receive his care at University of Iowa Stead Family Children’s Hospital.
Born at his local hospital, Noah began experiencing trouble breathing after birth. After being discharged at just 12 days old, he went into respiratory arrest and stopped breathing. Rushed to the Pediatric Intensive Care Unit at University of Iowa Stead Family Children’s Hospital, a pediatric ENT specialist immediately discovered that Noah was born with an extremely rare birth defect—congenital nasal pyriform aperture stenosis—which made it difficult to breathe. Two surgeries were needed to widen his airways.
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.
Garret’s first visit to University of Iowa Stead Family Children’s Hospital came when he was 6 months old and had blood in his diaper, but a cause could not be identified. When he went to his local doctor for an ear infection three months later, the pediatrician noticed large bruises and hematomas that couldn’t be traced to an injury. Blood tests showed abnormal blood counts, and Garret returned to UI Stead Family Children’s Hospital.
Harper was admitted to a Des Moines hospital in May 2017 with bloody stools and vomiting. She was diagnosed with E. coli, and when her condition still wouldn’t improve after four days, doctors determined that Harper’s E. coli had turned into E. coli with shiga toxin, producing hemolytic uremic syndrome (HUS).
In June 2017, Harper was diagnosed with embryonal rhabdomyosarcoma, a soft-tissue cancer, at University of Iowa Stead Family Children’s Hospital after her parents noticed a rapidly growing lump on her right cheek. The lump was a 6-centimeter tumor that had wrapped around crucial facial nerves and her jawbone.
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.
Christopher was born at University of Iowa Stead Family Children’s Hospital at 34 weeks gestation with several organs that were severely damaged. The first of many surgeries took place when he was just 2 weeks old. Since birth, Christopher has undergone more than 40 surgeries and has spent more than 1,000 nights in the hospital.
Gwen had been sick and weak for several weeks and had developed a rash in May 2017. She had seen several doctors but did not get a diagnosis until her dermatologist took a biopsy of the rash. Gwen was found to have juvenile dermatomyositis, a rare autoimmune disease that affects three in every 1 million children each year. In juvenile dermatomyositis, the immune system attacks blood vessels throughout the body, causing muscle inflammation. This can cause exhaustion from everyday activities like walking up stairs or lifting a backpack.
When his local doctors noticed an irregularity on his newborn screening, 3-day-old Mason and his parents were called to return to the hospital. After a few blood tests, Mason was diagnosed with phenylketonuria (PKU), a rare genetic disorder that prevents his body from being able to break down the amino acids found in proteins and some artificial sweeteners. If PKU is not treated, phenylalanine can build up to harmful levels in the body, causing intellectual disability and other serious health problems.