Morrison’s Jeg Weets Niemann-Pick disease type C (NPC), doctors told his mother Jenna that the best thing to do is create memories.
There are no approved cures for NPC. It’s a fatal genetic disease with only painful treatments.
But memories are exactly what Jenna and the rest of the Weets family are trying to create. They had some help on Saturday with the Iowa Hawkeye Kid Captain Program.
Jenna, Brad, Claire and Jeg left town Friday and went to their hotel. There, six-year-old Jeg was surprised to find his best friend waiting for him.
Saturday morning was a whirlwind of activities for the Weets. They started the day at the University’s presidents’ tailgate, located at the indoor practice facility for the Iowa Hawkeyes. Jeg, along with some of his best friends, ran around on the turf all morning – just being kids.
“Those are the moments that we hope we get so many more of,” Jenna said. “We pray that this medicine can help him long enough that he can just enjoy being a kid.”
Family joined them from Kansas and California and all over, while friends of Jegs’ came from Morrison to be with Jeg on his big day.
That’s the part Jeg was most excited for actually – having all of his loved ones around.
“These are his support system that he’s going to have the rest of his life and they’re our support system,” Jenna said,. “It means the world to us that they were just there to cheer us on.”
Jeg then got to the heart of his day. He was escorted through Kinnick Stadium into the tunnel, where he met coaches Kirk and Brian Ferentz. Brian Ferentz gave him an official hat.
Then he got to high-five the Hawkeyes as they took the field for their contest against Illinois. They called him by name and showed him that they were there to honor him.
He took the field, struck the pose he had practiced over and over the night before, and stared wide-eyed as he was in the thick of DI Football Saturday.
“He saw a great organization that made him feel special,” Jenna said. “Those things will push him through and things he’ll hold on to.”
It was huge for his parents as well. Jenna and Brad are tasked with seeing their son go through painful treatments week after week, not knowing if they’ll work.
With a disease as rare as NPC, they often feel like they are alone. On Saturday, they had the entire state of Iowa with them.
“Sometimes you feel so alone being a parent of a child with a rare disease. It’s isolating,” Jenna said. “To see people rooting for us, it makes a world of difference.”
And Jeg’s older sister Claire was equally a part of the activities.
“She is his biggest cheerleader and fan and supports him all the time,” Jenna said about her daughter. “She’s only nine and to see your sibling go through all this stuff … she does and awesome job to make sure he’s loved and does her best to support her little brother, and encourage. She’s the best big sister.
It was an overwhelming weekend for the family from small town Illinois. In Morrison, a restaurant opened early to have the game on in support of Jeg and the Weets family. On their way, they were honked at and waved to because of their “Kid Captain” sticker on their car. All day, they were reminded that they weren’t fighting along.
Overall, they made some of the best memories for Jeg.
“Those moments that we’re being thought about, that our struggles aren’t going unnoticed and that people are rooting for us, I cant say thank you enough.
“It gave us a reason to have everyone here making him feel special,” Jenna said. “That will stick with him forever.”