Overland Park teen bikes 150 miles to raise awareness, hope for his rare genetic disorder

    OVERLAND PARK, Kansas (KSHB) -- An Overland Park teen completed a 150-mile bike journey Sunday to raise awareness and hope for his rare genetic disorder.

Carson Hunt, 17, has Homocystinuria cblG (Cobalamin G), a rare metabolic disorder that impacts his ability to process amino acids.

The disease puts him at risk for seizures, permanent vision loss and even stroke. He’s also legally blind with some developmental delays.

Hunt is No. 28 of 51 known cblG cases in the world and has outlived most of the research done on this disorder.

Now, he has his sights set on exploring new treatments into adulthood.

“The pride looking at him; it warms my heart,” said Dana Hunt, Carson’s mother.

She’s been along for the ride since his birth.

“His disorder was not caught on the newborn screen, and we kept taking him back to the doctors ... and they're like, 'Nothing's wrong with him,'” Dana Hunt said.

It was a year before Carson was officially diagnosed, but that waiting is something Dana wants others to avoid.

“We’re really making it our mission to have these rare diseases on the newborn screen so that others don’t suffer the way we have,” she said.

Despite all the times Carson and his family heard the word "can't," he’s living proof of someone who "can."

He rides his bike often, plays saxophone in the marching band at Blue Valley Northwest High School, earned his Black Belt in Taekwondo, and has played soccer, basketball and golf.

He even learned how to ski in Utah and Colorado.

“Being told that you’re not able to do anything that you really want to do really does suck, but at the end of the day, you just gotta keep fighting the odds,” Carson Hunt said.

That mentality is why he participated in HCU Network America’s Race for Research.

The final leg of the race was hosted at The Kingdom Bar & Grille, where 50% of restaurant sales were donated to Carson’s team.

His goal was to bike 150 miles and raise $20,000 to fund more research grants for other kids like him.

“Our mission is [to] try to help the rare disease community know that you’re not alone,” Dana Hunt said.

Carson may have completed his 150 miles, but his journey is truly only beginning.

“I’ve been able to do anything I’ve put my mind to,” he said. “That’s our responsibility … [to] give people hope.”