Six-year-old Jeg Weets often travels back and forth from his hometown of Morrison, Illinois, to the University of Iowa Hospitals and Clinics. This time around, though, he won’t be coming to Iowa for an IV infusion — he’ll be honored as this week’s Kid Captain for his fight against Niemann-Pick disease type C.

Jeg lives with his parents, Jenna and Brad Weets, and older sister, Claire. He was diagnosed with both Niemann-Pick disease type C (NPC) and Crohn’s disease when he was 4 years old.

NPC is an ultra-rare progressive genetic disorder that causes accumulation of cholesterol in parts of the body, including the brain, liver, and spleen. According to UI clinical geneticist John Bernat, who originally diagnosed Jeg, the chances of a child having the disease are 1 in 100,000.

“We had no idea what [NPC] was,” Jenna Weets said. “We Googled it and found out that it was a fatal genetic disorder, and the average age of life was 10 years old. It was really traumatic for us, for our family.”

Now two years after his diagnosis, Jeg receives an experimental drug called VTS – 270 at a hospital in Chicago while also visiting UIHC every four weeks for treatment for his Crohn’s disease. Although there is no cure yet for NPC, his mother said the experimental drug Jeg receives has shown a lot of promise for slowing down the disease, especially because there was not much neurological damage done before Jeg began treatment.

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“We’re hopeful it will stall the disease long enough for science to catch up and for more treatments to become available,” she said.

Today, Jeg remains healthy and strong and hasn’t had any signs of progression in the disease for the last two years, according to Jenna. Although she said Jeg feels a bit shy to spend a day as the center of attention as Kid Captain, he’s excited to visit Kinnick as the Hawkeyes challenge the Fighting Illini from his home state at the game on Nov. 23.

“Honestly, I think he’s pretty much the coolest kid,” Jenna said. “Everywhere we go, everybody loves him. Ever since he was little, everyone has just gravitated towards him. He’s very sweet and kind and funny; he loves to sing. He has a lot going on in his life, and some of that stuff he doesn’t quite understand what it means, yet. He doesn’t let any of it get him down. He’s very strong.”

Jeg’s favorite things to do include “anything with an engine or a ball,” according to his mother. He’s a junior drag racer and has been named the honorary Kid Captain for the Morrison football team. Last weekend, he got to play catch with Nate Stanley on the field.

“We’re really, really excited about Saturday, and to be part of the Wave,” Jenna said. “We’ve never been to an Iowa Hawkeyes game yet.”

Before the disease progresses further, Jenna said she and her family are going to live each day like it’s their last.

“We’re not going to wait around and take it for granted. We’re going to go out and live life and give him all of these experiences, anything that we can do to give him an exciting experience while we can.”

Jenna said Kid Captain is one way her family has been able to raise awareness for NPC. She said the family’s community in Morrison has been constantly supportive.

“Watching his Kid Captain video, I can’t even believe that’s our family, and this is our life, and those people are us, and we’re part of this ultra-rare disease group,” she said. “But we have hope, great friends, a great community, and we’ll live every moment.”