Kid Captain: Maggie Larson

IOWA CITY, Iowa — Maggie Larson’s parents say their hope was restored after they began seeking treatment for their daughter’s rare, terminal disease at University of Iowa Stead Family Children’s Hospital.

Although Maggie Larson and her twin brother, Will, were born five weeks prematurely, the Urbandale, Iowa, siblings were hitting early developmental milestones.

“Will was developing his gross motor skills and Maggie was developing her fine motor skills and her speech earlier,” her father, Samuel, says.

“She talked and everything,” her mother, Heidi, adds. “She spoke in full sentences.”

But Maggie struggled when it came to walking. Heidi says Maggie’s legs would just crumble out from under her. The Larsons initially suspected Maggie’s difficulties in walking were related to cerebral palsy or a stroke, but an MRI came back as normal.

Eventually, the family got an answer, albeit a difficult one to hear. Maggie was diagnosed with a rare, terminal disease—metachromatic leukodystrophy—in February 2020, when she was almost 3 years old, at a children’s hospital in Minnesota.

Read Maggie’s story here.