QC 6-year-old battling rare disease taking field as Hawkeye Kid Captain for opener

ORION, Ill. (KWQC) — For six years, Harlow Taube’s family has cherished every single day while navigating a devastating medical diagnosis. On Saturday, the 6-year-old will get a moment of pure celebration as she takes the field as the Hawkeyes’ Kid Captain at Kinnick Stadium.

Harlow has attenuated MPS 1 Hurler syndrome, a milder, slower-progressing form of the rare genetic condition.

“It was pretty devastating. I was just at work and I think what she was 11 days old. When they called and said she tested positive for Hurler, and the nurse on the other line said don’t google it because you’re not gonna see anything good about it,” Harlow’s mother said.

Weekly treatment since infancy

Harlow’s body does not create enough of an enzyme to break down certain sugars, which her mother said affects her spine, brain and organs. There is no cure, and Harlow has been treated with weekly infusions at the hospital since she was 7 weeks old.

“It was a lot of several people holding her down. I, as her mother, trying to hold her down but still having, you know, you just want to pick her up and run out of there, but you know she needs this to live,” her mother said.

Meeting the Hawkeyes

For six years, Harlow’s family has focused on making the most of their time together.

“We just value all the time we have because we don’t know. It’s a lot of tough days but then they’re like hey Caitlin Clark’s on the 12th floor would you like to go meet and I’m like you know what like yeah, I really would like that would really help us feel a little bit better,” her mother said.

Harlow has met several Iowa Hawkeyes athletes. She most recently met the Iowa football team and head coach Kirk Ferentz on kids day at Kinnick Stadium.

“As a Hawkeye fan it was very exciting to be able to meet coach Ferentz and see the locker rooms,” her mother said. Harlow said she liked the pink locker room, which she said also had a pink toilet.

Kid Captain for season opener

Harlow will be on the field at Kinnick Stadium Saturday as Iowa’s Kid Captain for the season opener.

“I don’t know if we could ever express how thankful we are because it’s sad that we’re here I’d rather not be here at all and not do any of this and have her be completely healthy but to know they have this opportunity for kids who maybe are in the hospital a lot and don’t get other opportunities, it’s so amazing to be able to have something special for her because she doesn’t always get that,” her mother said.

Harlow said she does not like the “poke part” of her treatments because it hurts.

“Yeah, your poke hurts sometimes,” her mother said.