At 3 months old, freshman Carson Hunt was diagnosed with Homocystinuria (HCU) Cobalamin G (CBLG), a rare genetic disorder. This disorder has caused Hunt’s levels of the amino acid homocysteine to increase far beyond a typical amount, which has led to blindness, developmental delays and may pose other potential health issues in his future.

Before Hunt was diagnosed with HCU, his mom, Dana Hunt, said she knew something was wrong. She recalled the first time she could sense a problem was after being released from the hospital over Labor Day weekend.

“I picked him up and I left at three o’clock in the morning, because I looked at him and I’m like, nope, nope, something’s really wrong. I could tell when I looked into his eyes that something was really wrong,” Dana said. 

After Hunt’s diagnosis, Dana said she felt alone due to the rarity of his condition. 

“When we first were diagnosed, I mean, everyone was in shock,” Dana said. “There was no research. There was no group. There was no Network America. There was no one else like him because he was 28 out of 50 in the world globally at the time.”

In order to help other families dealing with HCU, Dana helped create the HCU Race for Research in 2019 to raise funds for researching the rare condition.

The Race for Research will take place throughout the entire month of September. During this month, Hunt will be riding his bike 100 miles to help raise money to donate.

“We have to come up with $40,000, and then we can send it to the National Institute of Health and then they bid it out all over the world,” Dana said.

Hunt said being able to gather these donations is important to him because it will provide him, and others like him, with a better chance at life. 

“This is definitely for awareness for not just me, but it’s also for other kids with homocystinuria, because there are different kinds,” Hunt said. “This can be a lot of research for all [types of] homocystinuria, so I’m really doing it for those kids as well.” 

In addition to helping people, Hunt said riding his bike is an important milestone that took him time and perseverance to achieve. In order to learn how to ride a bike, Hunt said when he was in fifth grade he did a camp called I Can Bike. In this camp, he said he and many other kids were able to learn to ride bikes in gyms and parking lots.

“After that, I was able to ride a bike even more, but I could really only do it in a parking lot,” Hunt said. “That’s where I felt comfortable riding a bike. But a few years ago, when Ethan, my brother, was still in high school, he helped me get better at riding a bike and now I have been biking around the neighborhood.”

Dana said watching Carson be able to achieve his goals like this has been very impactful for their entire family. She said she hopes to be able to continue to share Carson’s story in order to give back to others struggling with HCU.

“To have a platform finally, and to let our story be known is an amazing release because we’ve never ever lived our lives like the next day is your last day,” Dana said. “But when that’s potentially the situation it’s very difficult. But we have never let the disorder define us. It’s just part of our family”

Hunt said getting the chance to help people while doing something he loves has been very impactful on his life in many ways. 

“I feel like I finally have a purpose in life to help people, because people are always nervous like, ‘Is my kid going to live if something like that happens?’ I feel like well, your kid can have a chance to live, because I’ve been through it,” Hunt said.

Click here to donate to the HCU Race for Research.