Iowa football Kid Captain Maggie Larson talks with her eyes.
Closing them tight means no. If she doesn’t like what someone’s saying, she’ll simply look away. And if she really doesn’t want to continue a conversation, she’ll just pretend to be asleep.
“We like to say Maggie is nonverbal but speaks in fluent eye rolls,” Larson’s mother, Heidi, said.
According to her parents, Heidi and Samuel, the six-year-old is as feisty as can be. She won’t hesitate to give someone her opinion and will let out a laugh when she sees her brothers get in trouble. On Sept. 16, Maggie will get to see Kinnick Stadium from the field, as she will be Iowa football’s Kid Captain for Week 3.
Three years ago, Larson had the same attitude but was also talking and walking. She and her twin brother Will were born five weeks premature but, according to Samuel, were each hitting milestones in speech and motor skills during their first two years. Around age two, Maggie’s progress slowed.
When the Urbandale, Iowa, native tried to walk, her legs would “crumble,” Heidi said.
Heidi and Samuel thought it was a developmental delay and searched around to specifically define the problem. Even after undergoing numerous tests, MRIs, and Botox injections, no one could find exactly what was wrong.
“All the while [she was losing] her ability to speak, and you can see she was getting so frustrated,” Heidi said. “Trying to play and walk but not be able to. It was so hard to watch her go through that and not get answers. We could see something was wrong.”
Still in search of a diagnosis, Larson’s pediatrician sent the family to Gillette Children’s Specialty Care in Minneapolis, Minnesota, where an MRI scan of the brain initially looked normal. But when the scan was set to a different contrast, it revealed demyelination, a process that damages the protective myelin sheath around the brain. A supplementary urine sample found the cause.
On Feb. 28, 2020, Larson was diagnosed with Metachromatic leukodystrophy (MLD), a rare terminal disease that affects between one in 40,000 to one in 160,000 people. MLD creates a deficiency in an enzyme that helps break down lipids, resulting in a build-up of sulfatides.
These sulfatides are toxic to the myelin. Without myelin, the body’s motor neurons can’t send signals down to nerve cells, leading to a loss of motor skills over time.
Since there is no FDA-approved treatment for MLD, Larson’s parents found a clinical trial being done by the UI Stead Family Children’s Hospital aimed to slow the progression of the disease. During this study, Larson receives infusions of nutrients through a gastrostomy tube into her stomach and an infusion of the enzyme she lacks through a surgical port.
“She’s been through the gauntlet and still smiles every day,” Heidi said.
Larson has shown signs of improvement as she undergoes the trial, according to her parents. For instance, Larson can give a thumbs-up sign at the appropriate times. John Bernat, Larson’s primary physician at UI Stead, added that Maggie hasn’t developed any seizures common in MLD patients.
During the treatment, Larson’s cheerful spirit hasn’t dampened. Heidi explained how when Larson suffers a respiratory bug and is taken to the hospital via ambulance, the six-year-old is calmer than her.
“She’ll get multiple pokes for IVs, and that doesn’t even phase her,” Heidi said. “She knows that she’ll get through it, and she’ll be fine … She’s always happy to see people, be part of the action, and just be there.”
Larson and her family did not attend Kid’s Day at Kinnick, instead opting to travel out to California and visit Disneyland. Heidi explained how the choice to venture westward was just one of many spontaneous decisions the Larson family has made over the past few years, citing the application for Kid Captain as an example.
For her parents, Maggie’s smile and attitude not only motivate them but also serve as a reminder of her courage.
“She’s so brave,” Heidi said. “She’s had to have so many things under her and she still puts up with it, stays strong, and keeps smiling along.”