A six-year-old girl from Orion, Illinois, is bringing an inspiring story to Kinnick Stadium this weekend as she continues a treatment journey that began just weeks after she was born.
Harlow Taube was diagnosed with mucopolysaccharidosis type 1, or MPS 1, after a routine newborn screening detected the rare genetic disorder. Her parents, Marley and Ryan Taube, had no indication during the pregnancy or Harlow’s first checkup that anything was wrong.
The newborn screening changed everything.
Harlow was diagnosed with the attenuated, or milder, form of MPS 1. The condition affects the body’s ability to break down certain sugars and can lead to serious health complications without treatment. Although there is no cure, early diagnosis allowed Harlow to begin enzyme replacement therapy when she was just seven weeks old.
Her family chose University of Iowa Health Care Stead Family Children’s Hospital in Iowa City for her treatment after seeking a second opinion.
Since then, Harlow has made the hour-and-a-half trip from Orion to Iowa City every week for treatment. Her infusions can last about six hours.
Earlier this year, Harlow reached a major milestone — her 300th infusion.
The weekly trips have continued through birthdays, snowstorms and the challenges of everyday family life. Along the way, Harlow and her family have developed a close bond with the nurses and staff at Stead Family Children’s Hospital.
Harlow’s mother says the hospital staff became a source of strength for the family, especially during the early years of treatment when COVID-19 restrictions meant she often had to make the trips and sit through treatments alone.
Today, Harlow is six years old and in first grade. She enjoys dinosaurs, reading about tornadoes and other natural disasters, and watching Michael Jackson videos. She hopes to become a paleontologist someday.
Despite the challenges she has faced, Harlow has remained active and has shown no symptoms of the disease so far.
Her family says that is a testament to the importance of early detection and treatment.
Harlow will be recognized Saturday, September 5, during the Iowa Hawkeyes’ game against Northern Illinois at Kinnick Stadium.
For the Taube family, the recognition is another special moment in a journey that began with a routine newborn screening — and has continued with determination, support and weekly trips to Iowa City.
Photo Source: University of Iowa Health Care Stead Family Children’s Hospital. Photos were contributed by Harlow’s parents and UI Health Care Marketing and Communication.
