• Aidan Kasper

    Aidan Kasper, portrait

    Aidan was transferred from his local hospital to the neonatal intensive care unit (NICU) at University of Iowa Stead Family Children’s Hospital immediately after birth when doctors discovered he was born with Pierre Robin sequence, a set of facial abnormalities that includes a small lower jaw, a tongue that is placed farther back than normal, and blockage of the airways. He spent 56 days in the NICU.

  • Jeg Weets

    Jeg Weets, portrait

    At 2 years old, Jeg was seen by pediatric gastroenterologists at University of Iowa Stead Family Children’s Hospital, and was ultimately diagnosed with Crohn’s disease at age 4. When pediatric specialists noticed that his spleen was enlarged at a routine visit, they pushed for answers. Through extensive testing, Jeg was diagnosed with Niemann Pick Type C (NPC), a rare, progressive genetic disorder where cholesterol accumulates in body tissues, including the brain.

  • Mason Gonzalez

    Mason Gonzalez, portrait

    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.

  • Noah Hodgins

    Noah Hodgins, portrait

    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.

  • Quinn Stumpf

    Quinn Stumpf, portrait

    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.

  • Mason Zabel

    Mason Zabel, portrait

    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.

  • Comprehensive and convenient

    Ethan Rodriguez

    Ethan has faced health challenges since birth, one of which led to surgery for the young boy from Illinois. Fortunately, the Rodriguez family didn’t need to travel far from home for their pre- and post-surgery appointments.

  • Jaelyn Butikofer

    Jaelyn Butikofer

    Jaelyn first came to University of Iowa Stead Family Children’s Hospital in December 2010, when she was 10 months old. She wasn’t gaining weight, and her local doctor referred her to UI Stead Family Children’s Hospital for “failure to thrive.” She weighed just 10 pounds.

  • Maddox Smith

    Maddox Smith

    When Maddox was 5 years old, his parents noticed spots that looked like birthmarks but weren’t present before. They asked their family physician about the spots—called café au lait spots—and were referred to a genetics expert at University of Iowa Stead Family Children’s Hospital. They learned Maddox has neurofibromatosis (NF), a genetic disorder that causes tumors to grow on nerves, for which there is no treatment or cure.

  • Looking back, moving forward

    Myat Haggart Family from New York

    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.

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